Last Chance to Register!
NOAH Family Summer Camp registration closes today! Don’t miss out on family fun with your NOAH friends…learn more and register now:
Get to Know the NOAH Board – Mine Nisanci Garlin & Kayla Hamlin!
NOAH’s Board of Directors plays a crucial role in furthering our organization’s mission, and we’re excited to help the community get to know new and returning board members in the coming weeks.
This week, hear from Mine Nisanci Garlin & Kayla Hamlin, both newly appointed this spring, and stay tuned to get to know more NOAH Board members!
Published: May 15, 2023
Asian American, Native Hawaiian, and Pacific Islander Heritage Month!
NOAH community member, Sam P., “proudly represents 🇨🇳 (Chinese flag), and states that her albinism makes her feel ‘Asian undercover.’ “
Published: May 15, 2023
Spring for NOAH Shout-Out: Wisconsin’s White Cheddar!
Long-time NOAH fundraising team, Wisconsin’s White Cheddar, recently held their annual Bowl-a-thon fundraiser and raised over $2,400 for NOAH!
Thank you, White Cheddar team, for your continued dedication to NOAH!
Feeling inspired? We are!!
Start YOUR fundraising page today at: www.albinism.org/fun
Published: May 15, 2022
Spring for NOAH Shout-Out: NOAH Carolinas!
The NOAH Carolinas team recently held a fun and unique painting fundraiser. They raised nearly $600 for NOAH through online fundraising, an online silent auction, and an in-person paint night event that brought together their community.
Thank you, NOAH Carolinas team, for your continued dedication to NOAH!
Ready to create a unique fundraiser that works for YOU?
Create your fundraising page today at: www.albinism.org/fun
Published: May 15, 2022
- NOAH community member Kai Richardson is an 8th grader with albinism who won his regional spelling bee and will now compete at the Scripps National Spelling Bee in Washington, DC. Kai is one of only five spellers from Louisiana advancing to the national competition!Join us in congratulating Kai and wishing him good luck! https://www.kplctv.com/2023/04/18/maplewood-8th-grader-represent-swla-scripps-national-spelling-bee/
- Have you heard about the Hidden Disabilities Sunflower?Wearing a Hidden Disabilities Sunflower lanyard indicates to those around you that you have a hidden disability and “may need a helping hand, understanding, or more time in shops, at work, on transport, or in public spaces.” https://hiddendisabilitiesstore.com/us/insights/post/for-people-with-non-visible-disabilities
NOAH Events This Week!
TONIGHT: Dealing with Comments & Questions
May 15th at 8:30pm ET // 5:30pm PT
Registered attendees – join Sheila Adamo tonight at 8:30pm ET // 5:30pm PT to examine how to deal with comments and questions regarding albinism from others. We will analyze our own patterns of responses to others and explore ways of responding that will both honor our feelings and enable us to serve as role models.
Check out future workshops:
www.albinism.org/workshops
Published: May 15 2023
Starting Today: Eye Spy for NOAH!
May 15th – May 21st
Eye Spy for NOAH Starts TODAY!
Join us for this fun & easy albinism-themed scavenger hunt event today (May 15th) through Sunday, May 21st. Compete against players from across the country; the top-scoring players will be entered to win a NOAH prize pack!
www.albinism.org/NOAH-Connections/#eye-spy
Published: May 15, 2023
Wednesday: Young Adult Connections
May 17th at 9:00pm ET // 6:00pm PT
Mmmmm, donut! You bring the snacks, we’ll bring the fun! Join us this Wednesday, May 17th for a night of good times starting at 9:00 PM ET // 6:00 PM PT.
www.albinism.org/NOAH-Connections/#young-adults
Published: May 15, 2023
Thursday: Adult Connections
May 18th at 9:00pm ET // 6:00pm PT
Spring is in full bloom! Take a moment to stop and smell the roses, and join in on our Adult Connections call this Thursday, May 18th starting at 9:00 PM ET // 6:00 PM PT.
www.albinism.org/NOAH-Connections/#adults
Published: May 15, 2023
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: May 15, 2022
| Tuesday, May 23rd: NOAH Connections: Aging with Albinism NOAH Connections: Parenting without Pigment | Thursday, May 25th: NOAH Connections: Teens |
| Wednesday, May 31st: NOAH Connections: Young Adults | Thursday, June 1st: NOAH Connections: Adults |
| Thursday, June 8th: NOAH Connections: Teens | Wednesday, June 14th: NOAH Connections: Young Adults |
| Thursday, June 15th: NOAH Connections: Adults |
Hey NOAH!
We have a very exciting announcement about NOAH Family Summer Camp…
Check it out and register today!
www.albinism.org/nh-camp
Last Chance to Share Your Opinion!
NOAH plans our biennial conference as a special opportunity for our community to connect with old friends, meet new friends, and attend a variety of informational sessions/forums on topics important to those touched by albinism. We understand that there are a number of key factors that can dictate a community member’s participation in our largest in-person event.
As we evaluate our options for the 2026 conference, we need to hear from YOU about what factors are most important. Please complete the quick survey below by TOMORROW (May 9th). Your answers will help to guide our team to continue to offer a conference that meets your needs.
www.surveymonkey.com/r/NOAHCon
Published: May 8, 2023
Asian American, Native Hawaiian, and Pacific Islander Heritage Month
In honor of Asian American, Native Hawaiian, and Pacific Islander Heritage Month this May, we want to hear from YOU!
AA or NHPI PWAs, we invite you to share your experiences and how your heritage and albinism impact your life. Photos, videos, artwork, writing, or something else – we welcome anything you’d like to share with the community.
Please send submissions to eaubrey@albinism.org for the opportunity to be featured on NOAH social media and website throughout the month of May and beyond!
Published: May 8, 2023
Get to Know the NOAH Board – Rosalind Isom!
NOAH’s Board of Directors plays a crucial role in furthering our organization’s mission, and we’re excited to help the community get to know new and returning board members in the coming weeks.
Hear from Rosalind Isom, newly appointed this spring, and stay tuned to get to know more NOAH Board members!
Published: May 8, 2022
There’s Still Time to Sign Up!
Parents, grandparents, and caregivers – join Sheila Adamo on Monday, May 15th at 8:30pm ET // 5:30pm PT to examine how to deal with comments and questions regarding albinism from others. We will analyze our own patterns of responses to others and explore ways of responding that will both honor our feelings and enable us to serve as role models.
Register by May 13th to reserve your spot!
www.albinism.org/workshops
Published: May 8, 2022
- Long-time NOAH volunteer & previous McGowan Leadership Scholarship recipient, Elizabeth Schafer, was recently recognized by the Huntington Township Chamber of Commerce as a Long Island Young Professionals Honoree. Congratulations, Elizabeth!
https://www.facebook.com/photo/?fbid=601413648688812&set=a.597948635701980
NOAH Events This Week!
Tuesday: Parent Connections
May 9th at 9:00pm ET // 6:00pm PT
Let’s Chat About the IEP!
A lot of parents of PWAs have questions when it comes to IEPs – and that’s totally normal! Join Kathi Garza, M.Ed, TVI; Anne Corn, Ed.D; and Kayla Hamlin, TVI, COMS this Tuesday, May 9th at 9pm ET // 6pm PT to learn more about the IEP.
www.albinism.org/NOAH-Connections/#parents
Published: May 8, 2023
Thursday: Teen Connections
May 11th at 8:00pm ET // 5:00pm PT
Teens – have you missed us? We’ve missed you! Catch up with your PWA fam this Thursday, May 11th @ 8:00 pm ET // 5:00 pm PT for another Teen Connections session.
www.albinism.org/NOAH-Connections/#teens
Published: May 8, 2023
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: May 8, 2022
| Monday, May 15th: NOAH Workshops: Parents, Grandparents, and Caregivers | Wednesday, May 17th: NOAH Connections: Young Adults |
| Thursday, May 18th: NOAH Connections: Adults | Tuesday, May 23rd: NOAH Connections: Aging with Albinism NOAH Connections: Parenting without Pigment |
| Thursday, May 25th: NOAH Connections: Teens | Wednesday, May 31st: NOAH Connections: Young Adults |
| Thursday, June 1st: NOAH Connections: Adults |
Last Chance to Apply!
Remind the young leaders with albinism in your life – the deadline to apply for the Michael J. McGowan Leadership Scholarship Award is TODAY!
Learn more and finish up your application today:
www.albinism.org/leadership
Spring for NOAH Shout-Out: Dallas Bowls for NOAH!
On April 15th, the long-time NOAH fundraising team, Dallas Bowls for NOAH, held their annual Bowl-a-thon fundraiser and raised over $12,000 for NOAH!
Thank you, Dallas Bowls for NOAH team, for your continued dedication to NOAH!
Feeling inspired? We are!!
Start YOUR fundraising page today at: www.albinism.org/fun
Published: May 1, 2023
Guide Dog Day!
Wednesday was Guide Dog Day, and we invited PWAs in our community who have a guide dog to share a photo of them and their pup.
Check out the awesome photos shared and add your own photo on our recent Facebook post!
Published: May 1, 2023
Spring for NOAH Shout-Out: Albinism Rocks Rock-a-Thon!
On April 16th, the Albinism Rocks Rock-a-Thon team raised over $1,000 for NOAH at their family-friendly music event!
Thank you, Albinism Rocks team, for organizing this unique event to support NOAH!
Feeling inspired? We are!!
Start YOUR fundraising page today at: www.albinism.org/fun
Published: May 1, 2022
2022 Grant Updates
2022 Grant Updates
In 2022, the NOAH Research Program was pleased to award a total of $125,000 in albinism research grants to research laboratories in Pittsburgh, Pennsylvania, Bordeaux, France, and New York, New York. As we prepare to announce our 2023 grant recipients, we were pleased to hear a progress update from each institution. Check out our recent Facebook post for an update from Principal Investigator: Carol Ann Mason, Ph.D..
To support NOAH’s Research Program, visit https://app.donorview.com/jWZ7Y.
Published: May 1, 2022
Welcome Back, Maria!
We are excited to share that Maria Lepore-Stevens, director of Camp Abilities educational sports camps for athletes with visual impairments, will return as our Sports Director for NOAH Family Summer Camp this July!
For more details on camp staff, activities, and registration, visit: www.albinism.org/nh-camp
PS – considering attending for camp, but have questions? Check out All You Need to Know About NOAH Family Summer Camp this Thursday, featuring Camp Director Tricia Thomas and a panel of camp attendees!
Published: May 1, 2022
- Our friends at the HPS Network recently shared their 2023 Year in Review, which was presented at the recent HPS Network 28th Annual Conference. https://www.youtube.com/watch?v=xSTk2_I8ejk
- The American Council of the Blind’s Audio Description Project (ADP) Awards recognize outstanding contributions to the audio descriptions field each year; nominations are open now through May 5th! Learn more: https://www.facebook.com/photo/?fbid=618162730355739&set=a.464717929033554
- Long-time NOAH community member Kathi Garza has worked at Texas School for the Blind and Visually Impaired for 14 years, and was recently featured on their social media accounts.You might recognize Kathi from the cover of the most recent issue of Albinism InSight, or her famous Cookies with Kathi NOAH fundraiser!https://www.facebook.com/photo/?fbid=768726851457836&set=a.595216475475542
NOAH Events This Week!
Wednesday: Young Adult Connections
May 3rd at 9:00pm ET // 6:00pm PT
Wrapping up with exams? Want to celebrate another term coming to an end, or the start of a new month? Join fellow young adult PWAs this Wednesday May 3rd @ 9:00pm PT // 6:00pm PT for a well overdue evening of relaxation and fun!
www.albinism.org/NOAH-Connections/#young-adults
Published: May 1, 2023
Thursday: All You Need to Know About NOAH Family Summer Camp!
May 4th at 8:00pm ET // 5:00pm PT
If you’re considering attending camp for the first time and have some questions, this is the perfect session for you! Past attendees and staff are here to talk about NOAH camp and answer YOUR questions on Thursday, May 4th at 8pm ET // 5pm PT.
Sign up now!
www.albinism.org/NOAH-Connections/#camp
Published: May 1, 2023
Thursday: Adult Connections
May 4th at 9:00pm ET // 6:00pm PT
May the 4th be with you! Let the power of the force guide you to an evening of fun, laughs and nostalgia. If you didn’t get the Star Wars reference, join us to find out 😉
See you this Thursday, May 4th at 9:00pm ET // 6:00pm PT.
www.albinism.org/NOAH-Connections/#adults
Published: May 1, 2023
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: May 1, 2022
| Tuesday, May 9th: NOAH Connections: Parents & Caregivers | Thursday, May 11th: NOAH Connections: Teens |
| Monday, May 15th: NOAH Workshops: Parents, Grandparents, and Caregivers | Wednesday, May 17th: NOAH Connections: Young Adults |
| Thursday, May 18th: NOAH Connections: Adults | Tuesday, May 23rd: NOAH Connections: Aging with Albinism NOAH Connections: Parenting without Pigment |
| Thursday, May 25th: NOAH Connections: Teens |
One Week Left to Apply!
Remind the young leaders with albinism in your life – the deadline to apply for the Michael J. McGowan Leadership Scholarship Award is just one week away!
Learn more and finish up your application today:
www.albinism.org/leadership
All You Need to Know About NOAH Family Summer Camp!
If you’re considering attending camp for the first time and have some questions, this is the perfect session for you! Past attendees and staff are here to talk about NOAH camp and answer YOUR questions on Thursday, May 4th at 8pm ET // 5pm PT.
Sign up now!
www.albinism.org/NOAH-Connections/#camp
Published: April 24, 2023
Spring for NOAH Suggestions!
Long-time NOAH Fundraiser, Regan Gentile, shares her experiences and suggestions for hosting a fundraiser that interests you in our recent video!
Check out her suggestions and get your fundraising page started today at: www.albinism.org/fun
Royalty Free Music: https://www.bensound.com
License code: JHDKPTFSTSVPBJGH
Published: April 24, 2023
Thanks, Marleena & the SoCal NOAH Team!
Yesterday, Marleena Barber did a surprise takeover on the NOAH social media story, live from the SoCal NOAH Bowl-a-Thon in Anaheim, CA. Thank you, Marleena, for giving us an inside peek at this awesome event, and event host Rodney Ignacio and the SoCal NOAHs fundraising team for your continued dedication to NOAH!
Feeling inspired by the awesome fundraisers we’ve been sharing lately? Learn more about hosting your own event at: www.albinism.org/fun
Published: April 24, 2022
2022 Grant Updates
2022 Grant Updates
In 2022, the NOAH Research Program was pleased to award a total of $125,000 in albinism research grants to research laboratories in Pittsburgh, Pennsylvania, Bordeaux, France, and New York, New York. As we prepare to announce our 2023 grant recipients, we were pleased to hear a progress update from each institution. Check out our recent Facebook post for an update from Principal Investigator: Benoit Arveiler, PharmD, PhD.
To support NOAH’s Research Program, visit https://app.donorview.com/jWZ7Y.
Published: April 24, 2022
Thank You, Volunteers!
Last week was Volunteer Week, and we extended our appreciation to the many volunteers involved with our organization.
The volunteers pictured represent only a fraction of the many individuals who share their time, energy, talents, and more with NOAH. Thank you to each and every one of our volunteers!
Do you know a NOAH volunteer who makes a difference in the albinism community? Give them a shout-out on our recent Facebook post!
Published: April 24, 2022
- Did you know that Sarah Kane, long-time NOAH member and 2022 recipient of the McGowan Leadership Scholarship, recently received PennGALA’s Student Leadership Award? Each year, this award recognizes an LGBTQ+ student for demonstrating leadership, exemplifying excellence, and promoting diversity at Penn through student activities or community service.Congratulations, Sarah!! https://www.instagram.com/p/CqMOR5NM0ZK/?igshid=YmMyMTA2M2Y=
NOAH Events This Week!
Tuesday: Parenting without Pigment
April 25th at 9:00pm ET // 6:00pm PT
Join Andrew Sartorius and friends TOMORROW at 9pm ET // 6pm PTto discuss traveling with kids as a parent with albinism.
New to the group? There’s still time to sign up!
www.albinism.org/NOAH-Connections/#pwp
Published: April 24, 2023
Thursday: Teen Connections
April 27th at 8:00pm ET // 5:00pm PT
Teens – we can’t wait to see you this Thursday! Join us at 8pm ET // 5pm PT for a good time with great company.
www.albinism.org/NOAH-Connections/#teens
Published: April 24, 2023
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: April 24, 2022
| Wednesday, May 3rd: NOAH Connections: Young Adults | Thursday, May 4th: NOAH Connections: Adults |
| Thursday, May 11th: NOAH Connections: Teens | Monday, May 15th: NOAH Workshops: Parents, Grandparents, and Caregivers |
| Wednesday, May 17th: NOAH Connections: Young Adults | Thursday, May 18th: NOAH Connections: Adults |
| Tuesday, May 23rd: NOAH Connections: Aging with Albinism NOAH Connections: Parenting without Pigment |
Happy National Volunteer Week!
National Volunteer Week is April 16-22, and if you’ve been around for even a little while, you probably know that NOAH has a ton of fantastic volunteers who make it possible to continue our mission.
Join us in sending a special shout-out to NOAH’s many volunteers this week and beyond!
Want to learn more about volunteering for NOAH?
https://www.albinism.org/volunteer/
One Month Left to Register!
Games, crafts, campfires, NOAH pals, and more await you in NH this July…so what are you waiting for? Register today for NOAH Family Summer Camp!
Registration Deadline – May 15th:
www.albinism.org/nh-camp
Published: April 17, 2023
Bunker Bowlers Through the Years!
Remember the Bunker Bowlers team who raised over $1,300 for NOAH with their recent Bowl-a-Thon event this March? This year was also their 16th annual Bowl-a-Thon for NOAH (!!), and Frankie Bunker made a video slideshow to commemorate their family’s past 16 years of fundraising events.
Check out Frankie’s video: https://youtu.be/_5JGGLMa69Y
Published: April 17, 2023
Dealing with Comments and Questions
Parents, grandparents, and caregivers – join Sheila Adamo on Monday, May 15th at 8:30pm ET // 5:30pm PT to examine how to deal with comments and questions regarding albinism from others. We will analyze our own patterns of responses to others and explore ways of responding that will both honor our feelings and enable us to serve as role models.
Register by May 13th to reserve your spot!
www.albinism.org/workshops
Published: April 17, 2022
2022 Grant Updates
2022 Grant Updates
In 2022, the NOAH Research Program was pleased to award a total of $125,000 in albinism research grants to research laboratories in Pittsburgh, Pennsylvania, Bordeaux, France, and New York, New York. As we prepare to announce our 2023 grant recipients, we were pleased to hear a progress update from each institution. Check out our recent Facebook post for an update from Principal Investigator: Leah Byrne, PhD.
To support NOAH’s Research Program, visit https://app.donorview.com/jWZ7Y.
Published: April 17, 2022
Teen Spotlight – Update!
Adam W. had sent in a Teen Spotlight submission a few years ago that highlighted his involvement in his school’s JROTC program. We recently received an update from Adam that we are excited to share!
Check out his full update at www.albinism.org/teenspotlight
Published: April 17, 2022
- NOAH is proud to partner with ReelAbilities Film Festival: New Yorkto promote the film Jasmine is a Star. Enter code rffnoah for 20% off* festival tickets and passes!https://reelabilities.org/newyork/schedule/*not including opening night, closing night, and the industry summit tickets
NOAH Events This Week!
TODAY: Parents of Newly-Diagnosed Children & Young Children with Albinism Workshop
April 17th at 8:30pm ET // 5:30pm PT
Registered Attendees – join Sheila Adamo TONIGHT at 8:30pm ET//5:30pm PT to join a community that will share and learn about adapting to the new role of a parent of a child with albinism.
Learn more about upcoming workshops:
www.albinism.org/workshops
Published: April 17, 2023
Tuesday: Aging with Albinism
April 18th at 5:00pm ET // 2:00pm PT
Join Us for Aging with Albinism!
Older PWAs, join June Waugh and friends on Tuesday, April 18th at 5pm ET // 2pm PT for connections and great conversation.
New to the group? Sign up today!
www.albinism.org/NOAH-Connections/#aging
Published: April 17, 2023
Wednesday: Young Adult Connections
April 19th at 9:00pm ET // 6:00pm PT
Check out our Young Adult Connections session for fun, good company, and virtual sunshine this Wednesday from 9:00 PM ET // 6:00 PM PT!
New to the group? There’s still time to sign up!
www.albinism.org/NOAH-Connections/#young-adults
Published: April 17, 2023
Thursday: Adult Connections
April 20th at 9:00pm ET // 6:00pm PT
Start planting the seed of friendship and watch your relationships blossom!
Adults with albinism – join us for a night of fun and laughter while growing strong connections this Thursday at 9:00 PM ET // 6:00 PM PT.
www.albinism.org/NOAH-Connections/#adults
Published: April 17, 2023
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: April 17, 2022
| Tuesday, April 25th: NOAH Connections: Parenting without Pigment | Thursday, April 27th: NOAH Connections: Teens |
| Wednesday, May 3rd: NOAH Connections: Young Adults | Thursday, May 4th: NOAH Connections: Adults |
| Thursday, May 11th: NOAH Connections: Teens | Monday, May 15th: NOAH Workshops: Parents, Grandparents, and Caregivers |
| Wednesday, May 17th: NOAH Connections: Young Adults | Thursday, May 18th: NOAH Connections: Adults |
HPS Awareness Day – April 6th!
Last Thursday was HPS Awareness day, and NOAH believes that everyone in the albinism community should know about HPS (Hermansky-Pudlak Syndrome). Knowledge of HPS eliminates the risk of not knowing about something that may affect your well-being and makes preventative health management possible.
Looking for more information about this rare condition? Visit www.hpsnetwork.org
Published: April 10, 2023
Spring for NOAH Takeover – This Saturday!!
We are thrilled to share that Casey Greer will be taking over the NOAH social media story this Saturday, April 15th, live from the Dallas Bowls for NOAH Bowl-a-Thon in Plano, TX. We can’t wait to take a peek into this exciting fundraiser!
Check out NOAH’s Facebook or Instagram stories this Saturday for an inside peek at the Dallas Bowls for NOAH Bowl-a-Thon…you might even see some special guests from NOAH’s Board of Directors and staff make an appearance!
Learn more about Spring for NOAH and start a fundraiser today at: www.albinism.org/fun
Published: April 10, 2023
Fundraising Tips from the Wade Family!
Long-time NOAH Fundraisers, the Wade family, have some tips for hosting a successful bowl-a-thon event!
Check out their suggestions in our recent video and get your fundraising page started today at: www.albinism.org/fun
Music: Bensound.com/free-music-for-videos
License code: ZGDYOOVIZZ8WVCMO
Published: April 10, 2022
Where are they now?
2014 McGowan Leadership Scholarship recipient, Arielle Lewis, will graduate with her Health Law Certificate this spring and was recently awarded GSU College of Law’s Pro Bono Program Award.
Young leaders with albinism – check out Arielle’s full update and start YOUR application for the McGowan Leadership Scholarship today!!
www.albinism.org/leadership
Published: April 10, 2022
Last Chance to Sign Up!
Parents & caregivers, join Sheila Adamo Monday, April 17th at 8:30pm ET // 5:30pm PT to join a community that will share and learn about adapting to the new role of a parent of a child with albinism.
Register by this Saturday, April 15th to reserve your spot:
www.albinism.org/workshops
Published: April 10, 2022
NOAH Events This Week!
Tuesday: Grandparent Connections
April 11th at 7:30pm ET // 4:30pm PT
Grandparents – See You Tuesday!
Join Sherry Dinner and fellow grandparents this Tuesday, April 11th at 7:30pm ET // 4:30pm PT. We’ll discuss overstepping when it comes to being a grandparent of a child with albinism.
New to the group? Sign up today!
www.albinism.org/NOAH-Connections/#grandparents
Published: April 10, 2023
Tuesday: Military Families Connections
April 11th at 9:00pm ET // 6:00pm PT
NOAH Connections: Military Families is back!!
Join Ashley Maynard and fellow NOAH Military Families for a time of connection, support, and fellowship this Tuesday, April 11th at 9pm ET // 6pm PT.
Sign up today: www.albinism.org/NOAH-Connections/#military
Published: April 10, 2023
Thursday: Teen Connections
April 13th at 8:00pm ET // 5:00pm PT
Teens with albinism – spring is in the air and we want to celebrate with you. Come for the fun, stay for the company!
Join us for our next session of Teen Connections this Thursday, April 13th starting at 8:00 pm ET // 5:00 pm PT.
New to the group? There’s still time to sign up:
www.albinism.org/NOAH-Connections/#teens
Published: April 10, 2023
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: April 10, 2022
| Monday, April 17th: NOAH Workshops: Parents & Caregivers | Tuesday, April 18th: NOAH Connections: Aging with Albinism |
| Wednesday, April 19th: NOAH Connections: Young Adults | Thursday, April 20th: NOAH Connections: Adults |
| Tuesday, April 25th: NOAH Connections: Parenting without Pigment | Thursday, April 27th: NOAH Connections: Teens |
| Wednesday, May 3rd: NOAH Connections: Young Adults | Thursday, May 4th: NOAH Connections: Adults |
You’re Invited!
NOAH friends in Dallas, TX and Los Angeles, CA – check out our upcoming fundraising events in your area!
Join the Dallas Bowls for NOAH team on Saturday, April 15th in Plano, TX, or the Albinism Rocks Rockathon on Sunday, April 16th in Los Angeles, CA to support NOAH.
Check out more upcoming events, or start your FUNdraising page today at www.albinism.org/fun
MARCH MADNESS with NOAH Research Program
NOAH’s Research Program Committee shares why research is important to each of them. Check out the video in our recent Facebook post.
Our committee consists of the following members:
Donna Appell, RN – Executive Director of the HPS Network
Susan Ballis, M.D. – Founder, Vision for Tomorrow Foundation
Karen Bly – Executive Director, NOAH
Emma Brinkley, MS – Director of Scientific Services at IQVIA
Kerry Goetz, PhD Candidate – Associate Director, NEI Office of Data Science & Health Informatics, NIH
Diana McCown, MEd – Chief Operating Officer, TCS Interpreting and Captions/TCS Access
STAY TUNED as the “Madness” continues with the NOAH Research Program as we prepare to announce the 2023 Grant recipients in April!
You can support NOAH’s Research Program at: https://app.donorview.com/jWZ7Y
Published: April 3, 2023
Register Today!
We are thrilled to share that registration for NOAH Family Summer Camp 2023 is now open!
Thanks to a Delta Gamma Foundation Grant, we are able to offer a $200 registration discount to a limited number of campers with albinism ages 16 and under…so don’t delay. Register Today!
Published: April 3, 2023
One Month Left to Apply!
Remind the young leaders with albinism in your life – the deadline to apply for the Michael J. McGowan Leadership Scholarship Award is just one month away!
Learn more and start your application today:
www.albinism.org/leadership
Published: April 3, 2022
Grandparents – Mark Your Calendars!
Join Sherry Dinner and fellow grandparents on Tuesday, April 11th at 7:30pm ET // 4:30pm PT. We’ll discuss overstepping when it comes to being a grandparent of a child with albinism.
New to the group? Sign up today!
www.albinism.org/NOAH-Connections/#grandparents
Published: April 3, 2022
There’s Still Time to Sign Up!
Parents & caregivers, join Sheila Adamo Monday, April 17th at 8:30pm ET // 5:30pm PT to join a community that will share and learn about adapting to the new role of a parent of a child with albinism.
Register by April 15th to reserve your spot:
www.albinism.org/workshops
Published: April 3, 2022
- Future In Sight has upcoming workshops, events, and meet-ups for children and adults who are blind or visually impaired. In-person events are hosted in New Hampshire, and there are many virtual offerings too!To learn more about their upcoming offerings, visit: https://futureinsight.org/calendar/
NOAH Events This Week!
Wednesday: Young Adult Connections
April 5th at 9:00pm ET // 6:00pm PT
Have you missed a few connections? Come together, connect with others, and make memories. Join us this Wednesday, April 5th at 9:00 pm ET // 6:00 pm PT.
www.albinism.org/NOAH-Connections/#young-adults
Published: April 3, 2023
Thursday: Adult Connections
April 6th at 9:00pm ET // 6:00pm PT
Join us for a night of laughter, friendship, and good vibes at our upcoming Adult Connections session! See you this Thursday, April 6th at 9:00 pm ET // 6:00 pm PT.
Published: April 3, 2023
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: April 3, 2022
| Tuesday, April 11th: NOAH Connections: Military Families | Thursday, April 13th: NOAH Connections: Teens |
| Monday, April 17th: NOAH Workshops: Parents & Caregivers | Tuesday, April 18th: NOAH Connections: Aging with Albinism |
| Wednesday, April 19th: NOAH Connections: Young Adults | Thursday, April 20th: NOAH Connections: Adults |
| Tuesday, April 25th: NOAH Connections: Parenting without Pigment | Thursday, April 27th: NOAH Connections: Teens |
Spring for NOAH Shout-Out: Bunker Bowlers!
This weekend, the long-time NOAH fundraising team, Bunker Bowlers, held their annual Bowl-a-thon fundraiser and raised over $1,300 for NOAH!
Thank you, Bunker Bowlers, for your continued dedication to NOAH!
Feeling inspired by the Bunker Bowlers team? We are!!
Start YOUR fundraising page today at: www.albinism.org/fun
CJ thinks YOU should host a FUNdraiser for NOAH!
CJ’s Crew is one of many fundraising teams that host events to help support NOAH, and we want to add YOUR team to our list!
Check out CJ’s Video, then get started today at: www.albinism.org/fun
Music: Bensound.com
License code: ZSB7GCGRY5GXZWI5
Published: March 27, 2023
National Puppy Day!
Remember Cat in the Hat and Gertrude McFuzz, the two puppies with albinism from Red Desert Doodles who found their forever homes last summer?
In honor of puppy day (3/23), we got in touch with one of the families who received a puppy for an update.
Cara S. says: “Pearl is an energetic, lovable puppy! She loves to snuggle, play fetch, chew on her toys, run around outside, and get into all kinds of mischief with our 1-year-old! She knows how to sit, shake, and “place” on her bed. Her favorite toy is her stuffed chocolate-covered strawberry we gave her for Valentine’s Day! We’ve loved adding Pearl to our family and look forward to many years of fun with her.”
Check out the puppy update!
Published: March 27, 2023
Parents without Pigment – Mark Your Calendars!
Join Andrew Sartorius and friends Tuesday, April 25th at 9pm ET // 6pm PT to discuss traveling with kids as a parent with albinism.
New to the group? Sign up now!
www.albinism.org/NOAH-Connections/#pwp
Published: March 27, 2022
- NORD’s Living Rare, Living Stronger Patient and Family Forum is being held in Washington, DC on May 6, 2023 with options to attend virtually or in person. Early bird rates ended this Friday, but free tickets are available for patients & their families. More info: https://bit.ly/40jBwVy
- Did you know that HumanWare and the American Printing House for the Blind collaborated to create a new braille reader and writer device called the Monarch? The Monarch was recently highlighted in this TechCrunch article: https://techcrunch.com/2023/03/17/the-monarch-could-be-the-next-big-thing-in-braille/?
NOAH Events This Week!
TODAY: NOAH Connections – Dads!
March 27th at 9:00pm ET // 6:00pm PT
Calling All Super Dads!
Join Sam McClung and fellow dads of kids with albinism TONIGHT at 9pm ET // 6pm PT to connect with a community of those who just get it.
Whether you’re a brand new dad or have older kiddos with albinism, all are welcome to join!
www.albinism.org/NOAH-Connections/#dads
Published: March 27, 2023
Tuesday: Theater and Albinism – Tips & Tricks
March 21st at 9:00pm ET // 6:00pm PT
Join Marleena Barber, Casey Greer, and Dennis Hurley for a special session of NOAH Connections on Tuesday, March 28th at 9pm ET // 6pm PT. These talented actors with albinism will share their tips and tricks for PWAs in theater, followed by a Q&A!
All are welcome to join, so sign up today:
www.albinism.org/NOAH-Connections/#theater
Published: March 27, 2023
Thursday: Teen Connections
March 30th at 8:00pm ET // 5:00pm PT
Spring is in the air! Say goodbye to winter and hello to friends this Thursday, March 30th at our Teen Connections session starting at 8pm ET // 5:00pm PT.
www.albinism.org/NOAH-Connections/#teens
Published: March 27, 2023
Saturday: NOAH Kids’ PWA Book Club
April 1st at 5:00pm ET // 2:00pm PT
Kids with albinism, join Courtney & Alison K. for our final book club meeting this Saturday, April 1st at 5pm ET // 2pm PT.
Book club attendees should finish the book before this weekend’s meeting!
www.albinism.org/NOAH-Connections/#kids-book-club
Published: March 27, 2023
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: March 27, 2022
| Wednesday, April 5th: NOAH Connections: Young Adults | Thursday, April 6th: NOAH Connections: Adults |
| Tuesday, April 11th: NOAH Connections: Military Families | Thursday, April 13th: NOAH Connections: Teens |
| Monday, April 17th: NOAH Workshops: Parents & Caregivers | Wednesday, April 19th: NOAH Connections: Young Adults |
| Thursday, April 20th: NOAH Connections: Adults | Tuesday, April 25th: NOAH Connections: Parenting without Pigment |
| Thursday, April 27th: NOAH Connections: Teens |
Spring for NOAH!
NOAH Board Member, Elizabeth Drury, has an important message for YOU about our Spring for NOAH fundraising season!
As a long time community member, volunteer, and current Board Member, Elizabeth has a unique perspective on the importance of fundraising to help NOAH continue its work with the albinism community.
Check out her video message to the NOAH Community.
Inspired to jump into action? We are too! Check out www.albinism.org/funto get started today.
Parents of Newly-Diagnosed Children & Young Children with Albinism!
Parents & caregivers, join Sheila Adamo Monday, April 17th at 8:30pm ET // 5:30pm PT to join a community that will share and learn about adapting to the new role of a parent of a child with albinism.
Register by April 15th to reserve your spot:
www.albinism.org/workshops
Published: March 20, 2023
NOAH Connections: Military Families is Back!
Join Ashley Maynard and fellow NOAH Military Families for a time of connection, support, and fellowship on Tuesday, April 11th at 9pm ET // 6pm PT.
Sign up today: www.albinism.org/NOAH-Connections/#military
Published: March 20, 2023
Goodbye, Winter. Hello, Spring!
Today is the official first day of spring, and we are looking forward to warmer weather just around the corner.
What are you looking forward to this spring? Let us know on our recent Facebook post.
Published: March 20, 2022
- Did you know that long-time NOAH community member, Dan Ankenman, wrote an article titled “Dispelling the Disability Dilemma”that was recently featured on the Passion with Practice Blog? In this article, Dan shares his experiences as a law student with a disability.https://practicepro.wixsite.com/journal/single-post/dispelling-the-disability-dilemma
- Applications for EveryLife Foundation’s #RAREis Scholarship Fundare open now through April 13th! Applicants must be US residents 17+ who plan to enroll in undergraduate or graduate study for Fall 2023.More info: https://everylifefoundation.org/rare-scholarship/
NOAH Events This Week!
Tuesday: Aging with Albinism
March 21st at 5:00pm ET // 2:00pm PT
Older PWAs, you’re invited to join June Waugh and friends this Tuesday, March 21st, for our next session of Aging with Albinism!
New to the group? There’s still time to sign up!
www.albinism.org/NOAH-Connections/#aging
Published: March 20, 2023
Tuesday: Parenting without Pigment
March 21st at 9:00pm ET // 6:00pm PT
Calling all Parents without Pigment!
Join Kathi Garza and friends to discuss playtime and how to navigate all of the tiny toys.
New to the group? Sign up now!
www.albinism.org/NOAH-Connections/#pwp
Published: March 20, 2023
Wednesday: Young Adult Connections
March 22nd at 9:00pm ET // 6:00pm PT
Spring has begun and what better way to kick off the new season than with friends! Join us this Wednesday, March 22nd for a night of fun and laughter starting at 9pm ET // 6pm PT.
www.albinism.org/NOAH-Connections/#young-adults
Published: March 20, 2023
Thursday: Adult Connections
March 23rd at 9:00pm ET // 6:00pm PT
Getting caught up in all the March madness? Be sure to take a moment for yourself by relaxing with friends this Thursday, March 23rd at 9pm ET // 6pm PT.
www.albinism.org/NOAH-Connections/#adults
Published: March 20, 2023
Saturday: NOAH Kids’ PWA Book Club
March 25th at 4:00pm ET // 1:00pm PT
Kids with albinism, join Courtney & Alison K. for our third meeting of book club this Saturday, March 25th at 4pm ET // 1pm PT.
Book club attendees should read Chapters 13-18 for this weekend’s meeting!
www.albinism.org/NOAH-Connections/#kids-book-club
Published: March 20, 2023
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: March 20, 2022
| Monday, March 27th: NOAH Connections: Dads | Tuesday, March 28th: NOAH Connections: Theater and Albinism: Tips & Tricks |
| Thursday, March 30th: NOAH Connections: Teens | Saturday, April 1st: NOAH Connections: NOAH Kids’ Book Club |
| Wednesday, April 5th: NOAH Connections: Young Adults | Thursday, April 6th: NOAH Connections: Adults |
| Tuesday, April 11th: NOAH Connections: Military Families | Thursday, April 13th: NOAH Connections: Teens |
| Monday, April 17th: NOAH Workshops: Parents & Caregivers | Wednesday, April 19th: NOAH Connections: Young Adults |
| Thursday, April 20th: NOAH Connections: Adults | Tuesday, April 25th: NOAH Connections: Parenting without Pigment |
NOAH Research Program: About the Program
Learn more about the NOAH Research Program in our recent video, and stay tuned for more info!
Support NOAH’s Research Program – “Get in the Game” at https://app.donorview.com/jWZ7Y
Want to host a fundraiser, but don’t want to do it alone?
We’re here to help! Comment on this post or email us at fundraise@albinism.org, and we’ll help you connect with NOAH community members in your area.
Published: March 13, 2023
Where Are They Now?
2016 McGowan Leadership Scholarship recipient, Lee-Anne Thompson, had a busy 2022 educating her community and building awareness and accessibility for people with sight loss!
Young leaders with albinism – check out Lee-Anne’s full update and start YOUR application for the McGowan Leadership Scholarship today!!
Published: March 13, 2023
Do you know how NOAH was founded 40 years ago?
In honor of International Women’s Day last Wednesday, we shared a video interview with two of NOAH’s founders, Janice Knuth and Lee Laughlin, conducted by Alix Laughlin. Check out the video to hear Jan and Lee share how they initially got in touch, and began planning the first conference for PWAs.
Published: March 13, 2022
Announcing: IAAD 2023 Theme!
This year’s theme for International Albinism Awareness Day (June 13th) is Inclusion is Strength. The theme builds on last year’s theme of ensuring the inclusion of the voices of persons with albinism in all sectors of life.
Published: March 13, 2023
- Visually Impaired students in NH ages 14-21 are invited to Journey into Many Possibilities! 6/23-6/25 in Manchester, NH. Students will work with the TSA to learn about the airport security line/screening process. More details & RSVP: Dana at DanaTrahan@comcast.net
- Tactile Transmissions is a free 90-minute Access Program geared toward visitors who are blind or partially sighted, focusing on Chaim Gross’s work and the Renee & Chaim Gross Foundation‘s current exhibition, “Artists and Immigrants.” Learn more: https://www.rcgrossfoundation.org/events
NOAH Events This Week!
Wednesday: Parent & Grandparent Connections with Rick Thompson: Albinism and the Eye
March 15th at 9:00pm ET // 6:00pm PT
Parents, grandparents, and caregivers, you’re invited to a special session of NOAH Connections hosted by Rick Thompson, OD, FAAO. Join Rick, an optometrist and parent of a PWA, for an informative presentation about albinism and the eye.
www.albinism.org/NOAH-Connections/#parents
Published: March 13, 2023
Thursday: Teen Connections
March 16th at 8:00pm ET // 5:00pm PT
Teens – are you on March break? How are you spending your time off?
Take some time to gather with friends! Join us this Thursday, March 16th at 8:00pm ET // 5:00pm PT for a night of fun!
www.albinism.org/NOAH-Connections/#teens
Published: March 13, 2023
Saturday: NOAH Kids’ PWA Book Club
March 18th at 4:00pm ET // 1:00pm PT
Kids with albinism, join Courtney & Alison K. for our second meeting of book club this Saturday, March 18th at 4pm ET // 1pm PT.
Book club attendees should read Chapters 8-12 for this weekend’s meeting!
www.albinism.org/NOAH-Connections/#kids-book-club
Published: March 13, 2023
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: March 13, 2022
| Tuesday, March 21st: NOAH Connections: Aging with Albinism | Wednesday, March 22nd: NOAH Connections: Young Adults |
| Thursday, March 23rd: NOAH Connections: Adults | Saturday, March 25th: NOAH Connections: NOAH Kids’ Book Club |
| Monday, March 27th: NOAH Connections: Dads | Tuesday, March 28th: NOAH Connections: Theater and Albinism: Tips & Tricks |
| Thursday, March 30th: NOAH Connections: Teens | Saturday, April 1st: NOAH Connections: NOAH Kids’ Book Club |
| Wednesday, April 5th: NOAH Connections: Young Adults | Thursday, April 6th: NOAH Connections: Adults |
Announcing: NOAH Research Program March Madness!
Check out this special video announcement from NOAH Executive Director Karen Bly, and stay tuned for more info!
Two Months Left to Apply!
Remind the young leaders with albinism in your life – the deadline to apply for the Michael J. McGowan Leadership Scholarship Award is just under two months away!
Learn more and start your application today:
www.albinism.org/leadership
Published: March 6, 2023
Low Vision Tips & Tricks
In honor of Low Vision Awareness Month this February, we asked our community to share how they visually access their hobbies. February may be over, but we’re still adding more tips and tricks!
Check out the tips we’ve shared so far, and stay tuned for more submissions!
Published: March 6, 2023
Low Vision Tips & Tricks
In honor of Low Vision Awareness Month this February, we asked our community to share how they visually access their hobbies. Check out the great submissions we’ve received so far and stay tuned for more tips & tricks from PWAs in our community!
Published: March 6, 2022
Calling all Parents without Pigment!
Join Kathi Garza and friends Tuesday, March 21st at 9pm ET // 6pm PT to discuss playtime and how to navigate all of the tiny toys.
New to the group? Sign up now!
www.albinism.org/NOAH-Connections/#pwp
Published: March 6, 2023
NOAH Events This Week!
Wednesday: Young Adult Connections
March 8th at 9:00pm ET // 6:00pm PT
Have you been keeping busy? Hopefully not too busy to miss out on our next Young Adult Connections.
Carve out some time this Wednesday, March 8th at 9:00 PM ET // 6:00 PM PT and relax with good friends!
www.albinism.org/NOAH-Connections/#young-adults
Published: March 6, 2023
Thursday: Adult Connections
March 9th at 9:00pm ET // 6:00pm PT
Can’t believe it’s March already?
Don’t miss out on catching up with your PWA friends! Join us this Thursday, March 9th at 9:00 PM ET // 6:00 PM PT for a night of fun and laughs.
www.albinism.org/NOAH-Connections/#adults
Published: March 6, 2023
Saturday: NOAH Kids’ PWA Book Club
March 11th at 4:00pm ET // 1:00pm PT
Kids with albinism, join Courtney & Alison K. for book club Saturdays at 4pm ET // 1pm PT beginning March 11th. We’ll be reading “The Thing About Georgie” by Lisa Graff.
Kids’ PWA Book Club is recommended for kids ages 7-10.
Sign up today!
www.albinism.org/NOAH-Connections/#kids-book-club
Published: March 6, 2023
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: March 6, 2022
| Wednesday, March 15th: NOAH Connections: Parents, Grandparents, and Caregivers | Thursday, March 16th: NOAH Connections: Teens |
| Saturday, March 18th: NOAH Connections: NOAH Kids’ Book Club | Tuesday, March 21st: NOAH Connections: Aging with Albinism |
| Wednesday, March 22nd: NOAH Connections: Young Adults | Thursday, March 23rd: NOAH Connections: Adults |
| Saturday, March 25th: NOAH Connections: NOAH Kids’ Book Club | Monday, March 27th: NOAH Connections: Dads |
| Thursday, March 30th: NOAH Connections: Teens | Saturday, April 1st: NOAH Connections: NOAH Kids’ Book Club |
You’re Invited to Cookies with Kathi!
Don’t miss out on the chance to get your cookie-decorating on with Kathi Garza while supporting NOAH! For just $10, you can join Kathi to decorate cookies from the comfort of your home in two live sessions this Sunday, March 5th!
Friends & Families, join us at 3pm ET // 12pm PT. Adult PWAs, we can’t wait to see you at 5pm ET // 2pm PT.
Don’t miss out! Get your tickets now: www.albinism.org/fundraisers/cookies
Published: February 27, 2023
Calling All BIPOC PWAs!
To help the BIPOC Task Force and Connections Advisory Committee better understand the needs of the Black, Indigenous, and People of Color within our NOAH community, we invite you to fill out a brief survey.
All responses will remain anonymous unless you choose to share your contact information for further discussion with the committee.
https://forms.gle/S7fuDarauFy2n4rB8
Published: February 27, 2023
Let YOUR Voice Be Heard!
LGBTQ+ PWAs – looking for a way to help? Let YOUR voice be heard by joining the LGBTQ+ Advisory Task Force!
Learn more or apply to join the NOAH Connections LGBTQ+ Advisory Task Force today at:
www.albinism.org/NOAH-Connections/task-force
Published: February 27, 2023
Low Vision Tips & Tricks
In honor of Low Vision Awareness Month this February, we asked our community to share how they visually access their hobbies. Check out the great submissions we’ve received so far and stay tuned for more tips & tricks from PWAs in our community!
Published: February 27, 2023
Announcing: NOAH Kids’ PWA Book Club!
Kids with albinism, join Courtney & Alison K. for book club Saturdays at 4pm ET // 1pm PT beginning March 11th. We’ll be reading “The Thing About Georgie” by Lisa Graff.
Kids’ PWA Book Club is recommended for kids ages 7-10.
Sign up today!
www.albinism.org/NOAH-Connections/#kids-book-club
Published: February 27, 2023
- Remember NOAH community member Lyra T., who was on team “Little Red Hens” for the PBS show, Make48? We are excited to share that the episode featuring Lyra’s team aired last Wednesday (2/22) on This Old House Makers Channel (Roku Channel #458). Congratulations, Lyra!
NOAH Events This Week!
Thursday: Teen Connections
March 2nd at 8:00pm ET // 6:00pm PT
Teens, we can’t wait to see you Thursday! Join us for friends and good conversation at 8pm ET // 5pm PT.
New to the group? Sign up now!
www.albinism.org/NOAH-Connections/#teens
Published: February 27, 2023
Sunday: Cookies with Kathi!
March 5th at 3:00pm ET // 12:00pm PT
and 5:00pm ET // 2:00pm PT
Baker-extraordinaire Kathi Garza will be hosting a spring session of her popular Cookies with Kathi live virtual course to raise funds for NOAH and we hope to see you there!
Learn more and purchase your tickets today at: www.albinism.org/fundraisers/cookies
Published: February 27, 2023
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: February 27, 2023
| Wednesday, March 8th: NOAH Connections: Young Adults | Thursday, March 9th: NOAH Connections: Adults |
| Saturday, March 11th: NOAH Connections: NOAH Kids’ Book Club | Wednesday, March 15th: NOAH Connections: Parents, Grandparents, and Caregivers |
| Thursday, March 16th: NOAH Connections: Teens | Saturday, March 18th: NOAH Connections: NOAH Kids’ Book Club |
| Tuesday, March 21st: NOAH Connections: Aging with Albinism | Wednesday, March 22nd: NOAH Connections: Young Adults |
| Thursday, March 23rd: NOAH Connections: Adults | Saturday, March 25th: NOAH Connections: NOAH Kids’ Book Club |
| Monday, March 27th: NOAH Connections: Dads |
Black History Month – Community Submission
“I am twenty years old, I have albinism, and I am Black.
I was seventeen when the latter part of that… sentence started to trouble me…” – Yasmine Straker
We invited Black PWAs in our community to share their experiences in honor of Black History Month. Read the rest of Yasmine’s submission at www.albinism.org/Black-History
Published: February 20, 2023
Low Vision Awareness Month – Community Submission
In honor of Low Vision Awareness Month, we asked PWAs in our community to share how they visually access their hobbies.
Becca Evans shared a tip she uses with her dog, Tilly, when doing nosework.
Check it out on our new Low Vision Tips & Tricks page: www.albinism.org/lv-tips
Thank You, Winter Burn Bowl-a-Thon Team!
This weekend, Angela Adamo took over the NOAH social media story to share a peek into the NI NOAH Winter Burn Bowl-a-Thon. Thank you, Angela & team for letting us tune in to your event as you kicked off Spring for NOAH fundraising season!
Feeling inspired by the Winter Burn team? Learn more about setting up your own FUNdraiser today at: www.albinism.org/fun
Published: February 20, 2023
McGowan Leadership Scholarship
Young leaders with albinism – 2022 McGowan Leadership Scholarship recipient, Sarah Kane, is encouraging YOU to apply for this year’s scholarship.
Hear more about Sarah’s exciting future plans & why she recommends applying in our recent video!
Published: February 20, 2023
Calling All AmazonSmile Shoppers!
Looking for a different way to shop for NOAH?
iGive offers donations to NOAH on purchases at over 2,000 stores through their web browser extension or phone app, and it’s free to join. Amazon isn’t on their list, but some of your other favorite online retailers may be!
Learn more: https://www.igive.com/albinism
Published: February 20, 2023
- Users of the ReBokeh app are invited to complete a brief survey to help app developers better understand how people use the app, and which additional features would be most valuable. Anyone who completes the survey will be entered to win a $100 Amazon gift card. https://forms.gle/rMbVF8zUdrht3LgG9
NOAH Events This Week!
Tuesday: Aging with Albinism
February 21st at 5:00pm ET // 2:00pm PT
Older PWAs, you’re invited to join June Waugh and friends this Tuesday, February 21st, for our next session of Aging with Albinism!
New to the group? There’s still time to sign up!
www.albinism.org/NOAH-Connections/#aging
Published: February 20, 2023
Tuesday: Informational Call for Prospective Board Members
February 21st at 8:00pm ET // 5:00pm PT
Applications are currently being accepted to fill open positions on the NOAH Board of Directors.
Interested applicants are strongly encouraged to attend the informational call Tuesday, February 21st at 8pm ET // 5pm PT to fully understand the commitment necessary to become a Board Member.
Learn more at: https://albinism.org/board-of-directors/board-service/
Published: February 20, 2023
Wednesday: Young Adult Connections
February 22nd at 9:00pm ET // 6:00pm PT
Feel like time is passing by too quickly?
We’ll stop the clock and catch up with friends this Wednesday, February 22nd at 9:00pm ET // 6:00pm PT!
www.albinism.org/NOAH-Connections/#young-adults
Published: February 20, 2023
Thursday: Adult Connections
February 23rd at 9:00pm ET // 6:00pm PT
Feeling the February blues? Break out of the monotony and cheer up with your fellow PWAs.
Join us for fun, laughs, and good stories this Thursday, February 23rd at 9:00pm ET // 6:00pm PT!
www.albinism.org/NOAH-Connections/#adults
Published: February 20, 2023
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: February 20, 2023
| Thursday, March 2nd: NOAH Connections: Teens | Sunday, March 5th: NOAH Fundraiser: Cookies with Kathi |
| Wednesday, March 8th: NOAH Connections: Young Adults | Thursday, March 9th: NOAH Connections: Adults |
| Saturday, March 11th: NOAH Connections: NOAH Kids’ Book Club | Wednesday, March 15th: NOAH Connections: Parents, Grandparents, and Caregivers |
| Thursday, March 16th: NOAH Connections: Teens | Saturday, March 18th: NOAH Connections: NOAH Kids’ Book Club |
Are you interested in serving on the NOAH Board of Directors?
Applications are currently being accepted to fill open positions on the NOAH Board of Directors.
Interested applicants are strongly encouraged to attend the informational call Tuesday, February 21st at 8pm ET // 5pm PT to fully understand the commitment necessary to become a Board Member.
Learn more at: https://albinism.org/board-of-directors/board-service/
Published: February 13, 2023
BIPOC Survey
To help the BIPOC Task Force and Connections Advisory Committee better understand the needs of the Black, Indigenous, and People of Color within our NOAH community, we invite you to fill out a brief survey. All responses will remain anonymous unless you choose to share your contact information for further discussion with the committee.
Looking for a Way to Help?
Let YOUR voice be heard!
NOAH seeks volunteers to represent the community’s interests in planning for future NOAH Connections sessions.
Learn more or apply to join a NOAH Connections Advisory Task Force today at:
www.albinism.org/NOAH-Connections/task-force
Published: February 13, 2023
Re-Connecting with NOAH Connections!
As we continue into 2023, our programming team is eager to reconnect with YOU and provide virtual connections and workshops that meet the needs of our community. Do you have an idea for a topic? Would you like more information about a new product or service? Let us know!
Submit your ideas for virtual programs to connections@albinism.org.
Published: February 13, 2023
You’re Invited to Cookies with Kathi!
We are so excited to share that baker-extraordinaire, Kathi Garza, will be hosting a spring session of her popular Cookies with Kathi live virtual course to raise funds for NOAH.
There will be one session for families on Sunday, March 5th at 3pm ET // 12pm PT, followed by a session for adults with albinism on Sunday, March 5th at 5pm ET // 2pm PT.
Learn more and purchase your tickets today at: www.albinism.org/fundraisers/cookies
Published: February 13, 2023
Aging with Albinism!
Older PWAs, you’re invited to join June Waugh and friends on Tuesday, February 21st for our next session of Aging with Albinism!
New to the group? There’s still time to sign up!
www.albinism.org/NOAH-Connections/#aging
Published: February 13, 2023
- We are excited to share that NOAH community member & PWA, Lyra T., will be featured in an upcoming episode of the PBS show, Make48. Lyra and her classmates on team “Little Red Hens” had to develop an idea, make a prototype, then pitch their ideas to a panel of industry judges – all in 48 hours. Congratulations, Lyra – we can’t wait to see the episode! Check out a preview: https://www.youtube.com/watch?v=MYJ5aHVeDEY
- In honor of Black History Month, we share this insightful interview with model, lawyer, and activist with albinism, Thando Hopa. Interviewed by Molly Burke, Thando discusses her experiences being a Black PWA, the importance of representation, and more. https://www.facebook.com/watch/?v=984147518741493
- Did you know that NOAH community member & photographer with albinism, Benjamin Powell, recently released a photography book? His book, titled “Albinism Seen: A Story Through My Eyes,”expresses “…not only what we see, but how we feel on the inside while breaking through challenges on a daily basis [as PWAs].” To learn more about Albinism Seen, visit: www.benjaminpowell.org/albinismseen
- Amber Gabriel, author of The Edge of the Sword series, has made available a limited number of free audiobooks for the NOAH community. Gabriel writes “clean,” medieval action-adventure fantasy-romance for adults. Her series grapples with difficult topics like PTSD, human trafficking, polygamy, domestic violence, and discrimination without becoming dark or explicit. The Edge of the Sword series includes a character with oculocutaneous albinism, Princess Bashalis, who is introduced in book 3. Though the condition is unnamed in her fictional world, Gabriel’s goal in including this character is to promote understanding and offer a positive portrayal of albinism in a fantasy setting. If this sounds like your type of series, contact @amber_gabriel on Instagram or email her at amber.gabriel13@gmail.com and mention NOAH to receive a complimentary code for Spotify (books 1-4) and/or Audible (book 5). Though it is a series, each book can stand alone, so please specify where you wish to start.
NOAH Events This Week!
TODAY: Mothers’ Workshop
February 13th at 8:30pm ET // 5:30pm PT
Registered Attendees, join Sheila Adamo TONIGHT for our Mothers’ Virtual Workshop, inspired by the popular NOAHCon Mothers’ Workshop! This insightful workshop will provide information, guidance and support for mothers of children with albinism of all ages in the comfort of your own home.
To learn more about future workshops, visit:
www.albinism.org/workshops
Published: February 13, 2023
Thursday: Teen Connections
February 16th at 8:00pm ET // 5:00pm PT
Teens, we can’t wait to see you Thursday! Join us for our next session of teen connections for a good time with even better company.
www.albinism.org/NOAH-Connections/#teens
Published: February 13, 2023
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: February 13, 2023
| Tuesday, February 21st: NOAH Connections: Aging with Albinism | Wednesday, February 22nd: NOAH Connections: Young Adults |
| Thursday, February 23rd: NOAH Connections: Adults | Thursday, March 2nd: NOAH Connections: Teens |
| Sunday, March 5th: NOAH Fundraiser: Cookies with Kathi | Wednesday, March 8th: NOAH Connections: Young Adults |
| Thursday, March 9th: NOAH Connections: Adults | Wednesday, March 15th: NOAH Connections: Parents, Grandparents, and Caregivers |
Double Takeover Tuesday Tomorrow!
Are You Ready to Change Lives?
Would you like to apply for nomination to the NOAH Board of Directors?
Since 2017, the National Organization for Albinism and Hypopigmentation has operated with a board consisting of directors nominated from our diverse community and elected by our current board membership. An annual rotation of up to one fourth of the board and any unexpected vacancies require the Board Development Committee to identify potential directors ready to serve.
The programs and services that NOAH provides to the albinism community supply essential information and support like no other organization – and NOAH’s board of directors play a crucial role in the work that NOAH does. Members of the board are responsible for governance, serve a four-year term, volunteer on a board standing committee, support efforts to fund NOAH programs and attend up to two in-person meetings annually.
If you’re interested in changing lives in the albinism community through service on NOAH’s Board of Directors, visit https://albinism.org/board-of-directors/board-service/ to learn more!
Published: February 6, 2023
Black History Month
February is Black History Month, and we want to hear from YOU!
Black PWAs, we invite you to share your experiences as a Black person with albinism throughout February and beyond. We welcome written submissions, photos, videos, and more!
Please send submissions to eaubrey@albinism.org for the chance to be featured on NOAH social media and the NOAH website.
Low Vision Awareness Month
February is Low Vision Awareness Month, and we want to hear from the PWAs in our community.
How do you visually access your hobbies? Whether you enjoy participating in arts, sports, or something else, share one tip or trick you use along with a photo (of the tip, or of you doing your hobby!).
Selected submissions will be featured on NOAH social media and included on our new Low Vision Tips & Tricks page!
Please send your tips, tricks, and photos to Emily at eaubrey@albinism.org
PS – prefer to share a video, or have a different way you’d like to share? We welcome all types of submissions!
Published: February 6, 2023
Get Ready to Spring for NOAH!
Our Spring for NOAH fundraising weekend isn’t until April, but you can host a fundraiser any time that works for YOU!
Up first on the NOAH fundraising calendar is the 16th annual 🤩 Winter Burn Bowl-a-Thon in Illinois on February 19th.
Check out upcoming events and start your fundraising page today!
www.albinism.org/fun
Published: February 6, 2023
Announcing: Cookies with Kathi!
We are so excited to share that baker-extraordinaire, Kathi Garza, will be hosting a spring session of her popular Cookies with Kathi live virtual course to raise funds for NOAH.
There will be one session for families on Sunday, March 5th at 3pm ET // 12pm PT, followed by a session for adults with albinism on Sunday, March 5th at 5pm ET // 2pm PT.
Learn more and purchase your tickets today at: www.albinism.org/fundraisers/cookies
Published: February 6, 2023
There’s Still Time to Sign Up!
NOAH moms, join Sheila Adamo on Monday, February 13th at 8:30pm ET // 5:30pm PT for our Mothers’ Virtual Workshop, inspired by the popular NOAHCon Mothers’ Workshop! This insightful workshop will provide information, guidance and support for mothers of children with albinism of all ages in the comfort of your own home.
Register by Saturday, February 11th to reserve your spot!
www.albinism.org/workshops
Published: February 6, 2023
- Did you know that the American Council for the Blind’s Audio Description Project has compiled a list of Oscar-nominated filmsand where to watch them with audio descriptions? Learn more at:
https://acb.org/2023-oscars-AD-films? - Have you heard of CVS Spoken RX? Using the CVS app, or a Stand Alone Reader, Spoken RX will read your full prescription info in English or Spanish! Spoken RX was created for blind/low-vision patients to ensure that full prescription details, including dosing instructions & more, are readily accessible without having to read fine-print text. https://www.cvs.com/content/pharmacy/spoken-rx
NOAH Events This Week!
Tuesday: Parenting without Pigment
February 7th at 9:00pm ET // 6:00pm PT
Join Kathi Garza and friends this Tuesday, February 7th at 9pm ET // 6pm PT to discuss VI parenting hacks. We’ll talk about having food delivered, tips with Uber, getting help from neighbors, and more!
New to the group? There’s still time to sign up:
http://www.albinism.org/NOAH-Connections/#pwp
Published: February 6, 2023
Wednesday: Young Adult Connections
February 8th at 9:00pm ET // 6:00pm PT
Survey says, final answer, Yahtzee!
If you’re thinking the answer is ‘what is game night?’, you are correct! Try your luck at this week’s special edition young adult game night!
Join us this Wednesday, February 8th, 9:00 PM ET // 6:00 PM PTwww.albinism.org/NOAH-Connections/#young-adults
Published: February 6, 2023
Thursday: Adult Connections
February 9th at 9:00pm ET // 6:00pm PT
Do you have random facts of knowledge? Find yourself watching a game show and answering the questions before the contestant? Well you’re in luck! Bring your expertise to this Thursday’s adult connections game night and show us all that competitive spirit!
We’ll start the first round February 9th at 9:00 PM ET // 6:00 PM PT!
www.albinism.org/NOAH-Connections/#adults
Published: February 6, 2023
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: February 6, 2023
| Monday, February 13th: NOAH Workshops: Mothers’ Workshop | Thursday, February 16th: NOAH Connections: Teens |
| Tuesday, February 21st: NOAH Connections: Aging with Albinism | Wednesday, February 22nd: NOAH Connections: Young Adults |
| Thursday, February 23rd: NOAH Connections: Adults | Sunday, March 5th: NOAH Fundraiser: Cookies with Kathi |
Double Takeover Tuesday Tomorrow!
Up next for Takeover Tuesday, we have a double takeover featuring doctors with albinism, Megan Duffey & Bob Gabbay!
Megan is trained as an Internist and Pediatrician, and is currently in training to be an Infectious Diseases physician in Houston, Texas. She sees patients both in the clinic and hospital and treats a wide variety of infections.
Bob is the Chief Scientific and Medical Officer for the American Diabetes Association (ADA), the global authority on diabetes.
Make sure to check out the NOAH social media story tomorrow as they share a day in their lives!
www.instagram.com/noahalbinism
Published: January 30, 2023
You’ve Heard About the McGowan Leadership Scholarship…
…but do you know who is eligible?
The McGowan Leadership Scholarship isn’t just for high school seniors…young leaders with albinism living in the US/Canada, who are enrolled in an undergraduate program in the US/Canada as of Fall 2023, are encouraged to apply!
For more details or to start your application, visit:
www.albinism.org/leadership
Parents without Pigment, You’re Up Next!
Join Kathi Garza and friends on Tuesday, February 7th at 9pm ET // 6pm PT to discuss VI parenting hacks. We’ll talk about having food delivered, tips with Uber, getting help from neighbors, and more!
Join us!
www.albinism.org/NOAH-Connections/#pwp
Published: January 30, 2023
- Did you know that Perkins School for the Blind offers Career Launch Tech Bootcamp for blind & visually impaired adults ages 18+ with a high school diploma or college degree? Applications are currently being accepted for sessions in early February! Learn more: https://www.perkins.org/career-launch/career-launch-business-tech-bootcamp/?
- NORD’s Rare Impact Awards & Living Rare, Living Stronger Patient and Family Forum will be held on Saturday, May 6, 2023 in Washington, DC. For more details, check out their recent FB post:
https://www.facebook.com/photo?fbid=556198436534556&set=a.326614779492924 - Join us in congratulating Liza Corso & Kym Crosby, NOAH community members & athletes with albinism who were recently selected to join the 2023 U.S. Paralympics Track & Field National Team. Congratulations, Liza & Kym!! https://bit.ly/3kJMRy4
- Join us in congratulating Colleen Young, NOAH community member and athlete with albinism who was recently selected to join the 2023 National Paralympic Swim Team. Congratulations, Colleen! https://bit.ly/3wIfC0O
- NOAH community member and ReBokeh CEO & founder, Rebecca Rosenberg, was recently featured in a BBC News segment about the app she designed to help people with low vision navigate the world around them. Check it out! https://youtu.be/WwJvlKEDmdA
- The Paraclimbing Nationals will be held March 4-5 in Austin, TX, this year, with a category for visually impaired athletes. NOAH community member Linn Poston, previously featured at NOAH Night in the NOAH Has Talent! segment, will be competing! For more details and registration, visit: www.usaclimbing.org/compete/paraclimbing
NOAH Events This Week!
Thursday: Teen Connections
February 2nd at 8:00pm ET // 5:00pm PT
Spend your Groundhog day with fellow PWAs! Whether we have 6 weeks of winter or spring is coming early, join us for fun and good times this Thursday, February 2nd at 8:00 PM ET // 5:00 PM PT.
www.albinism.org/NOAH-Connections/#teens
Published: January 30, 2023
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: January 30, 2023
| Tuesday, February 7th: NOAH Connections: Parenting without Pigment | Wednesday, February 8th: NOAH Connections: Young Adults |
| Thursday, February 9th: NOAH Connections: Adults | Monday, February 13th: NOAH Workshops: Mothers’ Workshop |
| Thursday, February 16th: NOAH Connections: Teens | Tuesday, February 21st: NOAH Connections: Aging with Albinism |
| Wednesday, February 22nd: NOAH Connections: Young Adults | Thursday, February 23rd: NOAH Connections: Adults |
Takeover Tuesday is Back!
We are so excited to share that we will be resuming our #TakeoverTuesday series TOMORROW!
Make sure to check out the NOAH social media story tomorrow, as Kristen Dalton, a pediatric nurse practitioner, wife, and mother of two boys with albinism shares her busy day with the NOAH community. Tune in as she discusses her career in healthcare, living in a busy city, raising kids with albinism, and some of the tips, tricks, and tools that help her along the way!
www.instagram.com/noahalbinism
Published: January 23, 2023
Announcing: The 15th Anniversary McGowan Leadership Scholarship!
Do you know a young leader with albinism? Encourage them to apply for the McGowan Leadership Scholarship. Now in its 15th anniversary year, this scholarship recognizes and nurtures the creativity, passion and focus of the next generation of leaders in the albinism community.
Learn more:
www.albinism.org/leadership
Calling all NOAH Moms!
Join Sheila Adamo on Monday, February 13th at 8:30pm ET // 5:30pm PT for our Mothers’ Virtual Workshop, inspired by the popular NOAHCon Mothers’ Workshop! This insightful workshop will provide information, guidance and support for mothers of children with albinism of all ages in the comfort of your own home.
Register by February 11th to reserve your spot!
www.albinism.org/workshops
Published: January 23, 2023
- UN Independent Expert, Muluka-Anne Miti-Drummond shared an update about our friends at the Global Albinism Alliance and their ongoing work since 2020. Learn more in her recent Facebook post: https://bit.ly/3D71npS
- Join us in congratulating Canadian Paralympic goalball athlete & PWA, Amy Burk, who was recently elected onto the Canadian Paralympic Athletes’ Council! https://bit.ly/3ZYsrBK
- Our friends at ReBokeh are currently seeking a social media intern to help keep up engagement, coordinate with their marketing company, and help create and post additional content ad hoc. This is a paid position at about 10-15 hours per week starting ASAP. For more details, contact Rebecca Rosenberg at rebecca@rebokeh.com
- Did you know the the American Foundation for the Blind has Talent Lab internships available for college students in computer science, design, and engineering? Applications for the 2023 summer cohort are open now. Learn more: https://www.afb.org/talentlab
NOAH Events This Week!
Tuesday: Spring for NOAH Coffee Chat
January 24th at 8:00pm ET // 5:00pm PT
ANYTHING can be a fundraiser!!
Walks, Bowl-a-thon, BBQ, Cookies, Swimming…the possibilities are endless.
Join us this Tuesday, January 24th at 8pm ET // 5pm PT to share FUNdraiser ideas and connect with fellow NOAH supporters:
www.albinism.org/NOAH-Connections/#coffee
Published: January 23, 2023
Wednesday: Young Adult Connections
January 25th at 9:00pm ET // 6:00pm PT
Stay out of the cold and wet weather (New England, we’re looking at you!) and join us for an hour of fun! We’ll kick off our next Young Adult Connections call this Wednesday January 25th at 9:00 PM ET // 6:00 PM PT.
www.albinism.org/NOAH-Connections/#young-adults
Published: January 23, 2023
Thursday: Parent Connections
January 26th at 8:30pm ET // 5:30pm PT
Parents, you’re invited to our next session of Parent Connections!
Join Megan Pitt, LMHC and fellow parents of PWAs this Thursday, January 26th at 8:30pm ET // 5:30pm PT for meaningful connections in the new year.
Will we see YOU there?
www.albinism.org/NOAH-Connections/#parents
Published: January 23, 2023
Connections
January 26th at 9:00pm ET // 6:00pm PT
Keep the new year vibes magic going by joining us this Thursday January 26th for our Adult Connections! We’ll begin at 9:00 PM ET // 6:00 PM ET, don’t miss out!
www.albinism.org/NOAH-Connections/#adults
Published: January 23, 2023
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: January 23, 2023
| Thursday, February 2nd: NOAH Connections: Teens | Wednesday, February 8th: NOAH Connections: Young Adults |
| Thursday, February 9th: NOAH Connections: Adults | Monday, February 13th: NOAH Workshops: Mothers’ Workshop |
Martin Luther King Jr. Day
In observance of Martin Luther King Jr. Day, we share this photo captured at a march in Selma, Alabama in 1965 that features Dr. King alongside colleague and personal friend with albinism, Rev. Jesse L. Douglas.
Published: January 17, 2023
NOAH Research Program: Deadline Tomorrow!
The NOAH Research Program Call for Proposals deadline for LOI Forms and Expression of Interest Videos or Written Summaries is tomorrow.
Learn more:
albinism.org/research/#proposals
Spring for NOAH Coffee Chat!
If you can’t make it to our first Spring for NOAH Coffee Chat this Saturday (scroll down for more info!), worry not! We have a second chance for veteran fundraisers and newbies alike to join us to discuss FUNdraising ideas on Tuesday, January 24th at 8pm ET // 5pm PT.
Learn more & sign up now!
www.albinism.org/NOAH-Connections/#coffee
Published: January 17, 2023
Career Corner
Adults with albinism, we want to hear from you. Inspire our community by sharing information about your job or career through NOAH’s Career Corner feature.
Check out past submissions or submit information about your job or career today at:
www.albinism.org/career-corner
Published: January 17 2023
- Have you seen this recent news feature on NOAH community member, Ally M., who is a competitive gymnast with albinism? Check out the video to learn more about the accommodations she and her coaches have put into place to help her find success in her gymnastics training.https://www.wfft.com/video/fort-wayne-gymnast-vaulting-to-success-despite-vision-challenges/video_e1104bda-f395-566d-818b-4430cd6ce355.html
- Adults with HPS – did you know our friends at the HPS Network offer HPS Peer Support Group Calls just for you? Their next call in English will be held January 17th. Check out more information on their Facebook page: https://bit.ly/3HaWXkc
NOAH Events This Week!
Tuesday: Aging with Albinism
January 17th at 5:00pm ET // 2:00pm PT
Join special guest host, Karen Bly, and friends for our next session of Aging with Albinism this Tuesday at 5:00pm ET // 2:00pm PT.
New to the group? Our first session of the new year is the perfect time to join! Sign up now:
www.albinism.org/NOAH-Connections/#aging
Published: January 17, 2023
Wednesday: Newly-Diagnosed Parents of Parents of Young Children with Albinism Workshop
January 18th at 8:30pm ET // 5:30pm PT
Last Chance to Sign Up!
Parents & caregivers, join Sheila Adamo this Wednesday, January 18th at 8:30pm ET//5:30pm PT to join a community that will share and learn about adapting to the new role of a parent of a child with albinism.
Register by TODAY (1/16) to reserve your spot:
www.albinism.org/workshops
Published: January 17, 2023
Thursday: Teen Connections
January 19th at 8:00pm ET // 5:00pm PT
Teen PWAs, you’re up next! We can’t wait to see you this Thursday at 8pm ET // 5pm PT for our next session of Teen Connections.
New to the group? There’s still time to sign up!
www.albinism.org/NOAH-Connections/#teens
Published: January 17, 2023
Saturday: Spring for NOAH Coffee Chat
January 21st at 11:00am ET // 8:00am PT
Whether you’re a seasoned event host or new to the NOAH crew and not sure where to start, our Spring for NOAH Coffee Chat will be the perfect chance to connect with NOAH staff and fellow community members and brainstorm FUNdraising ideas that will be a blast for you and your loved ones, and help support NOAH!
Join us this Saturday, January 21st at 11am ET // 8am PT for our first of two Spring for NOAH Coffee Chats:
www.albinism.org/NOAH-Connections/#coffee
Published: January 17, 2023
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: January 17, 2023
| Tuesday, January 24th: NOAH Connections: Spring for NOAH Coffee Chat | Wednesday, January 25th: NOAH Connections: Young Adults |
| Thursday, January 26th: NOAH Connections: Parents NOAH Connections: Adults | Monday, February 13th: NOAH Workshops: Mothers’ Workshop |
Albinism InSight – Spring Feature: Do I Tell? Do I Ask?
Whether you are interviewing for a job, dating, making friends, or in any social situation, when is the right time and how do you explain that you have albinism? As a parent of a child with albinism, when do you talk with your child about it?
On the other hand, when you are approaching people with albinism, who and how do you ask questions for greater insight? Navigating a life with albinism is a unique journey, and education is important. How can it happen best for all parties involved?
Do you have insight to share? Consider submitting an article for the Spring Issue of Albinism InSight!
Submissions due January 18th. Learn more: www.albinism.org/ai/call-for-content
Published: January 9, 2023
You’re Invited to Aging with Albinism!
Join special guest host, Karen Bly, and friends for our next session of Aging with Albinism on Tuesday, January 17th at 5:00pm ET // 2:00pm PT.
New to the group? Our first session of the new year is the perfect time to join! Sign up now:
www.albinism.org/NOAH-Connections/#aging
Upcoming NOAH Workshops
Parents & caregivers, check out our upcoming workshop offerings & register today:
Wednesday, January 18th:
Parents of Newly Diagnosed Children & Young Children with Albinism
Monday, February 13th:
Mothers’ Virtual Workshop
Published: January 9, 2023
Parent Connections
Parents, you’re invited to our next session of Parent Connections!
Join Megan Pitt, LMHC and fellow parents of PWAs on Thursday, January 26th at 8:30pm ET // 5:30pm PT for meaningful connections in the new year.
Will we see YOU there?
www.albinism.org/NOAH-Connections/#parents
Published: January 9, 2023
- Have you heard about the new, VI accessible Kellogg’s packaging?Kellogg’s has announced that they will be adding NaviLens codes to boxes of its most popular cereal. The codes can be scanned from up to 40 feet away, and the NaviLens app will “offer verbal directions to help [shoppers] navigate to the cereal boxes.”https://www.foodnetwork.com/fn-dish/news/kellogg-navilens-cereal-packaging
- Did you know the Fine Arts Museums of San Francisco are working to expand audio descriptions of artwork to make their museums, including temporary exhibits, more accessible to the blind and visually impaired communities they serve? These new audio descriptions include “the basics of artist, medium, materials and size,” as well as “a general description of what the work depicts and from what perspective it is presented…” so that blind and visually impaired visitors can experience the works more fully. https://datebook.sfchronicle.com/art-exhibits/expanded-museum-audio-descriptions-help-the-sight-impaired-envision-the-art?mibextid=Zxz2cZ&
- XMO Sports is hosting Extreme Mobility Camps for blind and visually impaired athletes ages 14-30 and there are spots still available for their winter 2023 camps running from 2/26-3/5 in Denver, CO! Applications are due by January 10th!For more details or to apply, visit: https://www.xmocamps.org/apply
Contact Pat Malloy (pat.malloy@gmail.com) with questions!
NOAH Events This Week!
Wednesday: Young Adult Connections
January 11th at 9:00pm ET // 6:00pm PT
Young adults, see you Wednesday! We can’t wait to reconnect with old friends and meet new ones in our first Young Adult Connections session of the new year.
New the group? Sign up now!
www.albinism.org/NOAH-Connections/#young-adults
Published: January 9, 2023
Thursday: Adult Connections
January 12th at 9:00pm ET // 6:00pm PT
Adult PWAs, ready for our first connections session of 2023? We can’t wait to see you this Thursday!
Have you been thinking about joining Adult Connections, but haven’t attended a call yet? Now’s the perfect time to sign up and join us for the first time:
www.albinism.org/NOAH-Connections/#adults
Published: January 9, 2023
Sunday: LGBTQ+ and Allies
January 15th at 8:00pm ET // 5:00pm PT
LGBTQ+ PWAs and allies, we hope you’ll join us for our first NOAH Connections session just for you in 2023.
See you on Sunday, January 15th at 8pm ET // 5pm PT!
www.albinism.org/NOAH-Connections/#lgbtq
Published: January 9, 2023
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: January 9, 2023
| Tuesday, January 17th: NOAH Connections: Aging with Albinism | Wednesday, January 18th: NOAH Workshops: Parents & Caregivers |
| Thursday, January 19th: NOAH Connections: Teens | Wednesday, January 25th: NOAH Connections: Young Adults |
| Thursday, January 26th: NOAH Connections: Parents NOAH Connections: Adults |
Happy New Year!
Wishing everyone in our community a Happy New Year. We look forward to connecting with you virtually and in-person in 2023!
Published: January 2, 2023
Last Chance for Cookies with Kathi!
There’s just one week left to enjoy the Cookies with Kathi video library, and we don’t want you to miss out!
For just $20, you receive access to the Cookies with Kathi video library, including a supply list, Kathi’s favorite sugar cookie and flood icing recipes, and a complete set of instructional videos to lead you through each step of the process.
And perhaps the best part? All proceeds benefit NOAH!
What are you waiting for? Sign up now:
www.albinism.org/fundraisers/cookies
Share YOUR Story & Support NOAH!
Sharing YOUR story and the impact NOAH has made on your life is one of the easiest ways to support us this holiday season! We know you’re busy, but if you could take a few moments to share what NOAH means to you, we’d really appreciate it.
Submit a brief text, audio, or video response now:
https://www.videoask.com/f3qzarakt
Published: January 2, 2023
See You in the Twin Cities!
Adult PWAs, mark your calendars for our next Adults with Albinism Weekend, September 29 – October 1, 2023 in Minneapolis, MN!
www.albinism.org/adult-weekend
Published: January 2, 2023
NOAH Events This Week!
Thursday: Teen Connections
January 5th at 8:00pm ET // 5:00pm PT
Teens, join us this Thursday at 8pm ET // 5pm PT for our first Teen Connections session of the new year! Don’t miss out on this chance to catch up with friends and relax after the busy holiday season.
www.albinism.org/NOAH-Connections/#teens
Published: January 2, 2023
Sunday: New Year with NOAH!
January 8th at 7:00pm ET // 4:00pm PT
We can’t wait to kick off the New Year with our NOAH friends on Gatherly! We hope you’ll join us this Sunday, January 8th at 7pm ET // 4pm PT for activities, games, and good company.
All friends of NOAH are welcome, so spread the word!
www.albinism.org/NOAH-Connections/#new-year
Published: January 2, 2023
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: January 2, 2023
| Wednesday, January 11th: NOAH Connections: Young Adults | Thursday, January 12th: NOAH Connections: Adults |
| Sunday, January 15th: NOAH Connections: LGBTQ+ and Allies | Tuesday, January 17th: NOAH Connections: Aging with Albinism |
Happy Holidays!
Wishing a joyous Kwanzaa and a belated Merry Christmas to all in our community who celebrate!
Published: December 26, 2022
You’re Invited to New Year with NOAH!
We can’t wait to kick off the New Year with our NOAH friends on Gatherly! We hope you’ll join us on Sunday, January 8th at 7pm ET // 4pm PT for activities, games, and good company.
All friends of NOAH are welcome, so spread the word!
www.albinism.org/NOAH-Connections/#new-year
Share YOUR Story & Support NOAH!
Sharing YOUR story and the impact NOAH has made on your life is one of the easiest ways to support us this holiday season! We know you’re busy, but if you could take a few moments to share what NOAH means to you, we’d really appreciate it.
Submit a brief text, audio, or video response now:
https://www.videoask.com/f3qzarakt
Published: December 26, 2022
This one time at NOAH Camp…
Calling all campers with albinism and their families! Mark your calendars for our next NOAH Family Summer Camp, July 14-19, 2023.
We hope you’ll join us for slip n’ slides, s’mores, and lots of laughs with your NOAH friends!
Published: December 26, 2022
- Did you know that Giphy has partnered with Scribely to become the first GIF provider to have alt text available for their most popular content? Scribely’s writers will draft the alt text rather than using auto-generated image descriptions. https://www.facebook.com/photo/?fbid=527636842741662&set=a.464717929033554
- Have you heard of Three Pines, the new Amazon Prime Video tv series? One of the characters, Sophie, is described as having albinism. Sophie is played by Ali Hand, who refers to herself as “a disabled theatre artist and disability advocate.”https://www.imdb.com/title/tt15351648/
- Triston B. is an 8th grader with albinism who plays baseball and basketball at his school in Chicago. He and his family were recently featured in a CBS news story!https://www.cbsnews.com/chicago/news/chicago-ballplayer-triston-burns
NOAH Events This Week!
Tuesday: Winter BINGO!
December 27th at 7:00pm ET // 4:00pm PT
Ready to play BINGO?!
NOAH Kids, you’re invited to Winter BINGO with your NOAH friends. Print out your BINGO board and get ready to join Courtney & Alison on Tuesday, December 27th at 7:00pm ET // 4:00pm PT!
Sign up today:
www.albinism.org/NOAH-Connections/#BINGO
Published: December 26, 2022
Wednesday: Young Adult Connections
December 28th at 9:00pm ET // 6:00pm PT
Hey Young Adults!
Celebrate the holidays with your fellow PWAs. Join us this Wednesday, December 28th at 9pm ET // 6pm PT for our last connections session of the year!
www.albinism.org/NOAH-Connections/#young-adults
Published: December 26, 2022
Thursday: Adult Connections
December 29th at 9:00pm ET // 6:00pm PT
Wrap up this holiday season with friends! Join us this Thursday December 29th at 9pm ET // 6pm PT for our last Adult Connections session of 2022.
See you there!
www.albinism.org/NOAH-Connections/#adults
Published: December 26, 2022
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: December 26, 2022
| Thursday, January 5th: NOAH Connections: Teens | Sunday, January 8th: NOAH Connections: New Year with NOAH! |
| Wednesday, January 11th: NOAH Connections: Young Adults | Thursday, January 12th: NOAH Connections: Adults |
| Sunday, January 15th: NOAH Connections: LGBTQ+ and Allies |
Research Proposal Deadline Extended!
The NOAH Research Program Fall 2022 Call for Proposals deadline for LOI Forms and Expression of Interest Videos or Written Summaries has been extended. The new deadline for submissions is January 17, 2023.
Learn more:
www.albinism.org/research/#proposals
Published: December 19, 2022
Get Your Tickets for Cookies with Kathi!
Looking for an easy and fun activity to do with friends or family over the holidays that also supports a great cause? Look no further!
For just $20, you receive access to the Cookies with Kathi video library, including a supply list, Kathi’s favorite sugar cookie and flood icing recipes, and a complete set of instructional videos to lead you through each step of the process. Use the videos as many times as you want, now through January 8th.
All proceeds benefit NOAH!
www.albinism.org/fundraisers/cookies
Published: December 19, 2022
Hey NOAH Campers!
What’s your favorite memory from NOAH camp?
Share it here!
https://www.videoask.com/fv6yu3ycd
Published: December 19, 2022
Ready to play BINGO?!
NOAH Kids, you’re invited to Winter BINGO with your NOAH friends. Print out your BINGO board and get ready to join Alison & Courtney on Tuesday, December 27th at 7:00pm ET // 4:00pm PT!
Sign up today:
www.albinism.org/NOAH-Connections/#BINGO
Published: December 19, 2022
- Join us in congratulating NOAH community member and McGowan Leadership Scholarship recipient, Sarah Kane, who was recently announced as one of 40 Marshall Scholarship recipients for 2023. According to the Association of Marshall Scholars, recipients of this scholarship are “considered among the most accomplished undergraduate university students and recent graduates in the United States…” Congratulations, Sarah, on this incredible honor & accomplishment! https://marshallscholars.org/news-and-updates/2023-class
- Did you know that Perkins School for the Blind offers Career Launch Tech Bootcamp for blind & visually impaired adults ages 18+ with a high school diploma or college degree? Applications are currently being accepted for sessions in early 2023!Learn more: https://www.perkins.org/career-launch/career-launch-business-tech-bootcamp/?
NOAH Events This Week!
Tuesday: Parenting during the Holidays!
December 20th at 9:00pm ET // 6:00pm PT
Parents of PWAs, join Sam McClung & Kayla Hamlin for a special session of Parent Connections on Tuesday, December 20th at 9pm ET // 6pm PT. We’ll discuss parenting during the holidays and the joys and challenges that come with this time of year.
New to the group? There’s still time to sign up:
www.albinism.org/NOAH-Connections/#parents
Published: December 19, 2022
Thursday: Teen Connections
December 22nd at 8:00pm ET // 5:00pm PT
Teens, we can’t wait to see you this week! Cozy up with some tea or cocoa and your NOAH friends for our last Teen Connections call of the year this Thursday at 8pm ET // 5pm PT.
New to the group? Join today for the link to this call, and we’ll send you email reminders for future connections as well! www.albinism.org/NOAH-Connections/#teens
Published: December 19, 2022
NOAH Connections Holiday Break
December 23 – December 26th
NOAH Connections is going on a brief winter break from December 23-26th as our team and community members enjoy some quality time with family and friends.
We can’t wait to see you when we return on December 27th!
In the meantime, check out upcoming sessions including Winter BINGO, New Year with NOAH, and more at: www.albinism.org/NOAH-Connections
Published: December 19, 2022
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: December 19, 2022
| Tuesday, December 27th: NOAH Connections: NOAH BINGO | Wednesday, December 28th: NOAH Connections: Young Adults |
| Thursday, December 29th: NOAH Connections: Adults | Thursday, January 5th: NOAH Connections: Teens |
| Sunday, January 8th: NOAH Connections: New Year with NOAH! | Wednesday, January 11th: NOAH Connections: Young Adults |
| Thursday, January 12th: NOAH Connections: Adults | Sunday, January 15th: NOAH Connections: LGBTQ+ and Allies |
Announcing: Cookies with Kathi!
We are thrilled to share that cookie decorator extraordinaire Kathi Garza will be sharing an encore presentation of her popular “Cookies with Kathi” session this December!
For just $20, you receive access to the self-paced Cookies with Kathi video library, including a supply list, Kathi’s favorite sugar cookie and flood icing recipes, and a complete set of instructional videos to lead you through each step of the process.
All proceeds benefit NOAH!
www.albinism.org/fundraisers/cookies
Published: December 12, 2022
Hey NOOOAAAHH!
Got a favorite conference memory?
It doesn’t matter if it’s from Orlando in ’22, Las Vegas in ’08, or Chicago ’92, we want to hear from you!
Parenting during the Holidays!
Parents of PWAs, join Sam McClung & Kayla Hamlin for a special session of Parent Connections on Tuesday, December 20th at 9pm ET // 6pm PT. We’ll discuss parenting during the holidays and the joys and challenges that come with this time of year.
New to the group? There’s still time to sign up:
www.albinism.org/NOAH-Connections/#parents
Published: December 12, 2022
Employer Matching
Did you know that 78% of match-eligible donors have no idea whether their employer offers a matching gift program?
Employer gift matching is a great way to make your donation to NOAH go further, so ask your employer about it today!
Published: December 12, 2022
- Long-time NOAH volunteer and community member, Marleena Barber, was recently featured on Low Vision Moments, a podcast by fellow PWA Jennie Bovard. You can check out their discussion on low-vision moments of Christmas at the link below, or by searching for “Low Vision Moments” wherever you listen to your favorite podcasts! https://www.youtube.com/watch?v=3wDjOMnM_GA
- Did you know that NOAH Community member Ashley J. Hicks was recently selected as part of the 2022 Talent Showcase Cast for Disney Television Discovers? Congratulations, Ashley!!https://www.instagram.com/reel/ClooWfOAtLx/?utm_source=ig_web_copy_link
- NOAH Community member & PWA, Nuala, is a self-described “science and math enthusiast who makes fun drawings all about STEM, the vision impairment community, and other fun things too!”Interested in seeing Nuala’s artwork?
https://www.instagram.com/nsartlab/ - Join us in congratulating NOAH Board President Donté Mickens, who was recently nominated and selected for the 2023 edition of The Palm Beach 100 Most Influential Business Leaders. This is Donté’s second consecutive year of being acknowledged on this prestigious list. Congratulations, Donté!https://issuu.com/pbmg/docs/pb_100_2023-2024/36
NOAH Events This Week!
Tuesday: Aging with Albinism
December 13th at 5:00pm ET // 2:00pm PT
Older PWAs – looking to connect with those who just get it? Join June Waugh and friends for our next session of Aging with Albinism this Tuesday, December 13th at 5pm ET // 2pm PT!
Sign up today:
www.albinism.org/NOAH-Connections/#aging
Published: December 12, 2022
Wednesday: Young Adult Connections
December 14th at 9:00pm ET // 6:00pm PT
Young adults with albinism, you’re up next! Join us for our next session of Young Adult Connections this Thursday, to relax with PWA pals before the holiday madness kicks in next week.
New the group? Sign up now:
www.albinism.org/NOAH-Connections/#young-adults
Published: December 12, 2022
Thursday: Adult Connections
December 15th at 9:00pm ET // 6:00pm PT
Adult PWAs, will we see YOU on Thursday? Make sure to hop on our next call for social time with your NOAH friends!
Haven’t joined us for a call before? There’s still time to sign up:
www.albinism.org/NOAH-Connections/#adults
Published: December 12, 2022
Sunday: Kids’ Chat – Cocoa with Karen
December 18th at 7:00pm ET // 4:00pm PT
NOAH Kids, do you have a question for NOAH Executive Director Karen Bly? Now’s your chance to ask her!
Join us for NOAH Connections Kids’ Chat: Cocoa with Karen this Sunday, December 18th at 7pm ET // 4pm PT!
Sign up today:
www.albinism.org/NOAH-Connections/#cocoa
Published: December 12, 2022
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: December 12, 2022
| Tuesday, December 20th: NOAH Connections: Parents | Thursday, December 22nd: NOAH Connections: Teens |
| Tuesday, December 27th: NOAH Connections: NOAH BINGO | Wednesday, December 28th: NOAH Connections: Young Adults |
| Thursday, December 29th: NOAH Connections: Adults | Thursday, January 5th: NOAH Connections: Teens |
| Sunday, January 8th: NOAH Connections: New Year with NOAH! | Wednesday, January 11th: NOAH Connections: Young Adults |
| Thursday, January 12th: NOAH Connections: Adults | Sunday, January 15th: NOAH Connections: LGBTQ+ and Allies |
We Met Our Goal!
Thank you to everyone in our community who donated or shared our fundraiser for Giving Tuesday. We are thrilled to share that thanks to your generosity, we met our goal and earned the $4,000 NOAH Board of Directors’ Match!
If you wanted to donate but didn’t get a chance yet, there’s still time to make your gift go further by taking advantage of the Meta recurring gift match*, now through the end of the calendar year!
Published: December 5, 2022
NOAH Needs to Hear from You!
We’re collecting your NOAH stories to enhance outreach to the albinism community and support continued programming and resources.
It’s a quick and easy way to support NOAH. Click the link to learn more and share your story!
HPS Awareness – National Cookie Day!
In celebration of National Cookie Day on December 4th, we reviewed how cookies can teach us about Hermansky-Pudlak Syndrome (HPS): normal platelets look like chocolate chip cookies and HPS platelets look like butter cookies!
Learn more at:
https://www.hpsnetwork.org/hps-information/characteristics/
Published: December 5, 2022
- The Ford family attended their first NOAH Conference this July in Orlando, and shared insight on their experiences in this recent APH Family Connect article. https://familyconnect.org/blog/familyconnect-blog/parents-gain-a-new-perspective-on-their-sons-albinism-at-noah-conference/
- Did you know that Jocelyn Leworthy, NOAH volunteer and host of multiple NOAH Workshops and NOAH Connections sessions, was nominated for Georgian College’s Premier’s Award 2022 in the field of Health Sciences? Congratulations, Jocelyn!
https://www.georgiancollege.ca/blog/newsroom/georgian-proud-of-2022-premiers-awards-nominees/
NOAH Events This Week!
Wednesday: Parenting without Pigment
December 7th at 9:00pm ET // 6:00pm PT
Future parents with albinism – join Andrew & Catherine Sartorius this Wednesday, December 7th at 9pm ET // 6pm PT for another special session of Parenting without Pigment intended for PWAs who are not yet parents, but would like to have kids in the future.
www.albinism.org/NOAH-Connections/#pwp
Published: December 5, 2022
Thursday: Teen Connections
December 8th at 8:00pm ET // 5:00pm PT
Hey teens!
Don’t miss the opportunity to connect before the holidays. Join us this Thursday for another great teen connections session. See you all there!
www.albinism.org/NOAH-Connections/#teens
Published: December 5, 2022
Thursday: LGBTQ+ and Allies Connections
December 11th at 8:00pm ET // 5:00pm PT
LGBTQ+ PWAs and allies – join us on Sunday, December 11th at 8pm ET // 5pm PT for our next session of NOAH Connections just for you.
New to the group? There’s still time to sign up!
www.albinism.org/NOAH-Connections/#lgbtq or text LGBTQ+ to (417)473-2310
Published: December 5, 2022
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: December 5, 2022
| Tuesday, December 13th: NOAH Connections: Aging with Albinism | Wednesday, December 14th: NOAH Connections: Young Adults |
| Thursday, December 15th: NOAH Connections: Adults | Thursday, December 22nd: NOAH Connections: Teens |
| Wednesday, December 28th: NOAH Connections: Young Adults | Thursday, December 29th: NOAH Connections: Adults |
NOAH Needs to Hear from You!
We’re collecting your NOAH stories to enhance outreach to the albinism community and support continued programming and resources.
It’s a quick and easy way to support NOAH. Click the link to learn more and share your story!
AmazonSmile – Cyber Monday!
If you’re holiday shopping on Amazon this Cyber Monday, make sure to use AmazonSmile and select NOAH as your charity!
With AmazonSmile, you shop & Amazon gives 0.5% of every purchase directly to NOAH…it’s that easy!
Select NOAH as your charity & start shopping: https://smile.amazon.com/ch/23-2265173
Published: November 28, 2022
Giving Tuesday – TOMORROW!
Thanks to the generosity of NOAH’s Board of Directors, NOAH can earn a guaranteed $2,500 in matching funds this Giving Tuesday with YOUR support. Additionally, recurring (monthly) gifts to NOAH made via Facebook will be eligible for Meta’s recurring gift match after the second gift is processed.
Your support of NOAH goes even further this Giving Tuesday – no gift is too small!
Get ready to give TOMORROW!!
www.facebook.com/NOAH.Albinism
Published: November 28, 2022
Thank You for Coming to Friendsgiving!
We had so much fun at NOAH Friendsgiving yesterday. Thank you to our activity hosts, and to all who joined in on the festivities!
Published: November 28, 2022
- Have you seen the new LEGO ad featuring Katy Perry?This whimsical holiday commercial shows two kids with albinism receiving presents! https://www.youtube.com/watch?v=OdZS3qqW9SE
NOAH Events This Week!
Wednesday: Young Adult Connections
November 30th at 9:00pm ET // 6:00pm PT
Young adults – we can’t wait to see you this Wednesday for our next session of Young Adult connections!
New to the group? There’s still time to sign up:
www.albinism.org/NOAH-Connections/#young-adults
Published: November 28, 2022
Thursday: Adult Connections
December 1st at 9:00pm ET // 6:00pm PT
Adult PWAs, we hope you’ll join us for our first NOAH Connections call of December! This is a great chance to relax and connect with fellow friends with albinism during the busy holiday season.
www.albinism.org/NOAH-Connections/#adults
Published: November 28, 2022
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: November 28, 2022
| Wednesday, December 7th: NOAH Connections: Parenting without Pigment | Thursday, December 8th: NOAH Connections: Teens |
| Sunday, December 11th: NOAH Connections: LGBTQ+ and Allies | Tuesday, December 13th: NOAH Connections: Aging with Albinism |
| Wednesday, December 14th: NOAH Connections: Young Adults | Thursday, December 15th: NOAH Connections: Adults |
You’re Invited to NOAH Friendsgiving!
We had such a fun time celebrating NOAH Friendsgiving last year with the albinism community, so we’re bringing it back this holiday season! All friends of NOAH are invited to join us on Sunday, November 27th at 7pm ET // 4pm PT for a casual, virtual get-together to share thanks and relax with friends after Thanksgiving.
Check out the activities we have planned & sign up today!
www.albinism.org/NOAH-Connections/#friendsgiving
Giving Tuesday – Board Match!
Giving Tuesday is just one week away, and we are pleased to share that NOAH’s Board of Directors will be matching $2,500 of your gifts dollar-for-dollar on this annual day of giving!
If you’re planning to include NOAH in your year-end giving, please consider making a gift this Giving Tuesday to have an even bigger impact on the albinism community.
Published: November 21, 2022
Giving Tuesday – Meta Match!
In addition to the NOAH Board of Directors’ Match, your gift this Giving Tuesday has the chance to go even further! Meta will offer a special match for recurring gifts made through Facebook to help your recurring gift provide even more support to the albinism community.
On Giving Tuesday, every gift goes further! Stay tuned for more details and get ready to give.
Published: November 21, 2022
- Have you heard about “A Crash Course in Clashing” by Alexee Anais? Author Alexee Anais is PWA and NOAH community member who has recently released her first book, “A Crash Course in Clashing.” Congratulations, Alexee! https://www.barnesandnoble.com/w/a-crash-course-in-clashing-alexee-anais/1142544409?ean=9798987127919
- Have you heard about “Alley: I Have Albinism” by Alethea Allen? NOAH community member and PWA Alethea Allen recently released a children’s book, “Alley: I Have Albinism” about a 3rd-grade girl who wants to tell everyone about her albinism. Congratulations, Alethea! https://www.aletheaallen.com/
NOAH Events This Week!
Today – Saturday: NOAH Connections Thanksgiving Break
November 18th – November 26th
NOAH Connections is on Thanksgiving Break from November 18th through November 26th as our team & community enjoy time with loved ones over the holiday.
We’re taking a brief hiatus, be we have lots of great opportunities to connect coming in the next few weeks, starting with NOAH Friendsgiving this Sunday, November 27th!
Learn more about upcoming calls:
www.albinism.org/NOAH-Connections
Published: November 21, 2022
Sunday: Friendsgiving
November 27th at 7:00pm ET // 4:00pm PT
All friends of NOAH are invited to join us for a fun and casual get-together this Sunday at 7pm ET // 4pm PT. Choose from a number of fun activities including a recipe swap, scattergories, creating oreo turkeys, and more, or just enjoy social time with fellow NOAH community members. We can’t wait to see you there!
www.albinism.org/NOAH-Connections/#friendsgiving
Published: November 21, 2022
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: November 21, 2022
| Wednesday, November 30th: NOAH Connections: Young Adults | Thursday, December 1st: NOAH Connections: Adults |
| Wednesday, December 7th: NOAH Connections: Parenting without Pigment | Thursday, December 8th: NOAH Connections: Teens |
| Sunday, December 11th: NOAH Connections: LGBTQ+ and Allies | Tuesday, December 13th: NOAH Connections: Aging with Albinism |
| Wednesday, December 14th: NOAH Connections: Young Adults | Thursday, December 15th: NOAH Connections: Adults |
Announcing: NOAH’s 2022 Costume Contest Winners!
We received so many awesome submissions for this year’s costume contest. Thanks to everyone who participated, and a special shout-out to our 2022 costume contest winners!
Group Costume Winner:
#23 – The Lee Family
Duo Costume Winner:
#52 – Morgan & Lincoln
Individual Costume Winner:
#49 – Caiden
Fall 2022 – Call for Proposals
NOAH is proud to announce a request for proposals to support albinism research focusing on vision/visual system as it relates to albinism and, new this cycle, dermatology as it relates to albinism.
Help us spread the word! Full details:
albinism.org/research/#proposals
Published: November 14, 2022
You’re Invited to NOAH Friendsgiving!
We had such a fun time celebrating NOAH Friendsgiving last year with the albinism community, so we’re bringing it back this holiday season! All friends of NOAH are invited to join us on Sunday, November 27th at 7pm ET // 4pm PT for a casual, virtual get-together to share thanks and relax with friends after Thanksgiving.
Sign up today!
www.albinism.org/NOAH-Connections/#friendsgiving
Published: November 14, 2022
- Have you heard about Dateability? Dateability is an app created by two sisters in response to their experiences with ableism and stress about disclosing chronic illness when dating. The app aims to provide a “safe and accepting space to create meaningful connections for people with physical, intellectual, and psychiatric disabilities.” https://info.dateabilityapp.com
NOAH Events This Week!
TONIGHT: Ocular Albinism – Parents, Grandparents, and Caregivers Connections
November 14th at 9:00pm ET // 6:00pm PT
Join Pamela Tarnawa and fellow parents, grandparents, and caregivers TONIGHT for an open discussion on the unique challenges a family faces when their child or grandchild has Ocular Albinism.
There’s still time to sign up!
www.albinism.org/NOAH-Connections/#oa
Published: November 14, 2022
Tuesday: Aging with Albinism
November 15th at 5:00pm ET // 2:00pm PT
Join June Waugh and friends TOMORROW, Tuesday, November 15th, at 5pm ET // 2pm PT to connect and discuss the challenges and joys of one’s senior years with albinism.
www.albinism.org/NOAH-Connections/#aging
Published: November 14, 2022
Wednesday: Young Adult Connections
November 16th at 9:00pm ET // 6:00pm PT
Hooray! We have another PWA Young Adult virtual connections session scheduled for Wednesday November 16th @ 9:00 PM ET // 6:00 PM PT. Be sure to share the link with others and join us for another evening of great conversation.
www.albinism.org/NOAH-Connections/#young-adults
Published: November 14, 2022
Thursday: Adult Connections
November 17th at 9:00pm ET // 6:00pm PT
Looking to connect with old friends and make new ones? We are hosting another adult PWA connection session this Thursday November 17th @ 9:00 PM ET // 6:00 PM PT. Be sure to mark those calendars and join us!
www.albinism.org/NOAH-Connections/#adults
Published: November 14, 2022
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: November 14, 2022
| Sunday, November 27th: NOAH Connections: NOAH Friendsgiving | Wednesday, November 30th: NOAH Connections: Young Adults |
| Thursday, December 1st: NOAH Connections: Adults | Wednesday, December 7th: NOAH Connections: Parenting without Pigment |
| Thursday, December 8th: NOAH Connections: Teens | Sunday, December 11th: NOAH Connections: LGBTQ+ and Allies |
| Wednesday, December 14th: NOAH Connections: Young Adults | Thursday, December 15th: NOAH Connections: Adults |
Takeover Tuesday – TOMORROW!
We are so excited to check out what Amaeya D. is up to TOMORROW, November 8th, for our next takeover Tuesday! Amaeya is a Statistics major at UCLA, and we can’t wait to follow along with a day in his life.
Vote Today – NOAH’s Halloween Costume Contest!
All of our fabulous contestants have been added to our contest photo album, so make sure to check it out and “like” your favorite costume to vote.
Voting closes this Saturday, November 12th!
Published: November 7, 2022
National Adoption Awareness Month
In observance of National Adoption Awareness Month, we invite community members to share their family’s story for the chance to be featured on NOAH social media.
Comment on our recent Facebook Post or submit via email to marketing@albinism.org with your story & photos.
Photo Credit: Positive Exposure
Published: November 7, 2022
Holiday Shopping Made Easy!
The holiday season is just around the corner, and we have the perfect gift for the NOAH-lovers in your life. Check out the NOAH gear store on Zazzle to complete holiday shopping for the whole family while supporting a great cause!
Published: November 7, 2022
- UN Independent Expert on Albinism, Muluka-Anne Miti-Drummond, seeks written inputs from stakeholders to inform her next report to the 52nd session of the Human Rights Council in March 2023. Submission deadline: November 21st. Full details & submission link are included in her recent post:
https://www.facebook.com/photo/?fbid=667809804711860&set=a.290815032411341
NOAH Events This Week!
TONIGHT: Understanding and Supporting Siblings of Children with Albinism Workshop
November 7th at 8:30pm ET // 5:30pm PT
Registered attendees – join Sheila Adamo TONIGHT to better understand the experiences of siblings of PWAs, and become empowered to meet each challenge with love and support.
Registration for this workshop is now closed. For more information about future workshops, visit:
www.albinism.org/workshops
Published: November 7, 2022
Tuesday: Parenting without Pigment – Future Parents
November 8th at 9:00pm ET // 6:00pm PT
Calling all future parents with albinism!
Join Andrew Sartorius this Tuesday, November 8th at 9pm ET // 6pm PT for a special session of Parenting without Pigment intended for PWAs who are not yet parents, but would like to have kids in the future.
www.albinism.org/NOAH-Connections/#pwp
Published: November 7, 2022
Thursday: Teen Connections
November 10th at 8:00pm ET // 5:00pm PT
Teen PWAs, join us for our next session of NOAH connections just for you this Thursday November 10th @ 8:00pm ET // 5:00pm PT.
Don’t miss out! Join today:
www.albinism.org/NOAH-Connections/#teens
Published: November 7, 2022
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: November 7, 2022
| Monday, November 14th: NOAH Connections: Ocular Albinism – Parents, Grandparents, and Caregivers | Tuesday, November 15th: NOAH Connections: Aging with Albinism |
| Wednesday, November 16th: NOAH Connections: Young Adults | Thursday, November 17th: NOAH Connections: Adults |
Announcing: NOAH’s Virtual Costume Contest!
Whether it’s funny, scary, cute, or spooky, we want to see YOUR Halloween costume! PWAs – email a photo of your costume to NOAH(marketing@albinism.org) by Friday, November 4th, to enter our virtual costume contest.
Check out our contestants who have submitted so far in our Facebook album, and “like” your favorite to vote for them!
Published: October 31, 2022
Spirit of Change Award – Positive Exposure
We are pleased to share that NOAHreceived Positive Exposure’s 2022 SPIRIT OF CHANGE Award on Monday, October 24th. Executive Director Karen Bly and Board Secretary Sonja Harris accepted this prestigious honor on behalf of our community.
Thank you, Positive Exposure, for your ongoing partnership and for honoring NOAH with this meaningful award!
Published: October 31, 2022
There’s Still Time to Sign Up!
Parents, Grandparents, & Caregivers – join Sheila Adamo on Monday, November 7th to better understand the experiences of siblings of PWAs, and become empowered to meet each challenge with love and support.
Register by November 5th to secure your spot!
www.albinism.org/workshops
Published: October 31, 2022
- We are excited to share this video update from Jo Rochelle, director of Jasmine Is A Star!
https://www.facebook.com/NOAH.Albinism/videos/1079682776164146Interested in catching a screening of Jasmine Is A Star near you? Learn more at: https://www.jasminestarmovie.com/screenings - UN Independent Expert on Albinism, Mulaka-Anne Miti-Drummond, presented a report on the human rights challenges of persons with albinism on the move at the 77th session of the UNGA last week. Check out the recording of this report, as well as a video summary: https://www.facebook.com/photo/?fbid=662147918611382&set=a.290815032411341
NOAH Events This Week!
Wednesday: Young Adult Connections
November 2nd at 9:00pm ET // 6:00pm PT
Young adults, you’re up next! Join us this Wednesday at 9pm ET // 6pm PT to re-connect with old friends and make some new ones.
www.albinism.org/NOAH-Connections/#young-adults
Published: October 31, 2022
Thursday: Adult Connections
November 3rd at 9:00pm ET // 6:00pm PT
PWAs, you’re invited to our first Adult Connections of November. We can’t wait to “see” you this Thursday at 9pm ET // 6pm PT!
www.albinism.org/NOAH-Connections/#adults
Published: October 31, 2022
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: October 31, 2022
| Monday, November 7th: NOAH Workshops: Parents & Caregivers | Tuesday, November 8th: NOAH Connections: Parenting without Pigment |
| Thursday, November 10th: NOAH Connections: Teens | Monday, November 14th: NOAH Connections: Ocular Albinism – Parents, Grandparents, and Caregivers |
| Wednesday, November 16th: NOAH Connections: Young Adults | Thursday, November 17th: NOAH Connections: Adults |
Takeover Tuesday – TOMORROW!
We are so excited to share that Gabriella S. will be joining us to share a day in her life as a college student in NYC. Make sure to check out our story tomorrow to see what she’s up to!
Would you like to share a day in YOUR life on NOAH social media? Send a message to Emily at eaubrey@albinism.org with some information about yourself for the chance to be featured in a future takeover!
We Need YOUR Help with an Albinism InSight Special Photo Feature!
The upcoming 40th Anniversary Issue of Albinism InSight will include a special photo feature of NOAH memories from the past four decades. Do you have photos from NOAH events to share?
Upload YOUR photos now!
https://bit.ly/3FcBiYu
Published: October 24, 2022
Feeling some FOMO about NOAH Night?
Worry not! For a limited time only, you can join in the celebration of NOAH’s 40th and view the NOAH Night recording.
Purchase recording access today: www.albinism.org/NOAHNight
PS – NOAH Night attendees, check your inbox for recording access included FREE with your ticket purchase!
Published: October 24, 2022
Calling All Future Parents with Albinism!
Join Andrew Sartorius on Tuesday, November 8th at 9pm ET // 6pm PT for a special session of Parenting without Pigment intended for PWAs who are not yet parents, but would like to have kids in the future.
www.albinism.org/NOAH-Connections/#pwp
Published: October 24, 2022
Commemorative Coins!
NOAH’s 40th birthday celebration continues with commemorative coins, available now!
https://app.donorview.com/KgNQM
Have you ordered your commemorative coin? Comment on on our recent Facebook Post to let us know how you plan to display or use it when it arrives!
Published: October 24, 2022
Thank YOU for Shopping for NOAH!
Shoutout to our AmazonSmile shoppers, whose purchases raised over $600 for NOAH from April-June 2022! In total, AmazonSmile has donated over $10k to NOAH from community purchases.
When you shop on AmazonSmile, 0.5% of every purchase goes to NOAH. Start shopping for NOAH today: smile.amazon.com/ch/23-2265173
Published: October 24, 2022
- We are excited to share that NOAH member Sadie T. is the voice of Pearl, a bunny with albinism in Nick Jr.‘s “Blues Clues and You!” Congratulations, Sadie!! In addition to selecting a PWA to voice Pearl, the show worked with fellow NOAH member Sophie Ostrove, a Disability Inclusion Consultant for this new character, to ensure that Pearl is represented accurately and positively!Check out this clip from the most recent episode featuring Pearl:
https://www.youtube.com/watch?app=desktop&v=ehobODGB8Uw - We are pleased to share that NOAH has been selected as the recipient of Positive Exposure’s 2022 SPIRIT OF CHANGE Award. Several NOAH community members will be traveling to New York City TODAY, Monday, October 24th, as Executive Director Karen Bly and Board Secretary Sonja Harris accept this prestigious honor on behalf of our NOAH community. Stay tuned for updates from the event! https://bit.ly/3VZIoFy
- Did you know? The Global Albinism Alliance is holding an International Science Conference on Albinism on November 16-19, 2022. This virtual conference will serve as a global forum to improve the health of those with albinism.For more info & registration, visit: https://isca2022.albinismalliance.org/
NOAH Events This Week!
Thursday: Teen Connections
October 27th at 8:00pm ET // 5:00pm PT
Teens, join us this Thursday to re-connect with old friends and make new ones at our next session of Teen Connections. We can’t wait to “see” you there!
New to the group? Sign up today at:
www.albinism.org/NOAH-Connections/#teens
Published: October 24, 2022
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: October 24, 2022
| Wednesday, November 2nd: NOAH Connections: Young Adults | Wednesday, November 3rd: NOAH Connections: Adults |
| Monday, November 7th: NOAH Workshops: Parents & Caregivers | Tuesday, November 8th: NOAH Connections: Parenting without Pigment |
| Thursday, November 10th: NOAH Connections: Teens | Monday, November 14th: NOAH Connections: Ocular Albinism – Parents, Grandparents, and Caregivers |
| Wednesday, November 16th: NOAH Connections: Young Adults | Thursday, November 17th: NOAH Connections: Adults |
Albinism InSight Submissions Due Wednesday!
Submitting an article is a great way to share your knowledge and experience with the albinism community. There’s still time to contribute reflections to the 40th Anniversary Issue of Albinism InSight!
Submissions due Wednesday, October 19th.
More info: www.albinism.org/AI/call-for-content
Less Than One Week Left!
Join us for a fundraiser challenge in honor of NOAH’s 40th Birthday!
To celebrate all that NOAH has provided to the albinism community in the past 40 years, we are asking 40 community members to start a FB fundraiser as part of our challenge running now through Saturday, October 22nd.
Help us reach our goal of 40 fundraisers – create yours today!
www.facebook.com/NOAH.albinism
Published: October 17, 2022
Thank You, NOAH Night Sponsors!
Join us in thanking our NOAH Night sponsors for their support of NOAH& the albinism community:
Diamond Sponsor
Epstein | Ostrove, LLC
Bronze Sponsor
Oak St. Health
After Party Sponsor
Gatherly
Published: October 17, 2022
Thank YOU for Joining us at NOAH Night!
We had a wonderful time celebrating NOAH’s 40th birthday with the albinism community on Saturday night. Thank you to all who joined us to reflect on the past 40 years and look to NOAH’s future!
Published: October 17, 2022
Register Today!
Parents, Grandparents, & Caregivers – join Sheila Adamo on Monday, November 7th to better understand the experiences of siblings of PWAs, and become empowered to meet each challenge with love and support.
Register by November 5th to secure your spot!
www.albinism.org/workshops
Published: October 17, 2022
- Have you heard about Pearl? Pearl is a bunny with albinism who was recently introduced on Nick Jr.’s “Blue’s Clues and You!” We are proud to share that NOAH community member Sophie Ostroveis a Disability Inclusion Consultant, working closely with the show to develop Blue’s new friend, ensuring that she is represented accurately and positively!You can check out the most recent episode featuring Pearl at: http://www.nickjr.com/episodes/pvik5p/blue-s-clues-you-something-new-at-blue-s-school-season-3-ep-15 Congratulations, Sophie! We can’t wait to learn more about Pearl in future episodes.
- FYI: Humanity & Inclusion, located in Silver Spring, MD, is hiring a U.S. Grants Finance Officer. They are committed to inclusive hiring, welcome applicants with disabilities, and are flexible about remote work. For more info or to apply, visit: https://www.hi-us.org/jobs-hi-us-grants-finance-officer
NOAH Events This Week!
Tuesday: Aging with Albinism
October 18th at 5:00pm ET // 2:00pm PT
Join June Waugh and friends this Tuesday at 5pm ET // 2pm PT for a lively discussion of Technology, the vast universe of new and easy (sometimes) ways to communicate, to work, be entertained, enlightened and informed! Phones, tablets, Alexa, Siri, Bard, Audible, Libby, Hoopla, watches, air pods, Zoom, OH MY! No wonder Dorothy was overwhelmed in the Land of Oz!
New to the group? There’s still time to join!
www.albinism.org/NOAH-Connections/#aging
Published: October 17, 2022
Wednesday: Young Adult Connections
October 19th at 9:00pm ET // 6:00pm PT
Young adults, join us for our next session of NOAH Connections just for you this Wednesday at 9pm ET // 6pm PT. This is the perfect chance to connect and chat with fellow young adult PWAs.
www.albinism.org/NOAH-Connections/#young-adult
Published: October 17, 2022
Thursday: Adult Connections
October 20th at 9:00pm ET // 6:00pm PT
Adults, join us this Thursday for quality time with your PWA pals! Whether you’re new to Adult Connections or have attended in the past, don’t miss out on this upcoming chance to connect!
www.albinism.org/NOAH-Connections/#adults
Published: October 17, 2022
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: October 17, 2022
| Thursday, October 27th: NOAH Connections: Teens | Wednesday, November 2nd: NOAH Connections: Young Adults |
| Wednesday, November 3rd: NOAH Connections: Adults | Monday, November 7th: NOAH Workshops: Parents & Caregivers |
| Tuesday, November 8th: NOAH Connections: Parenting without Pigment | Thursday, November 10th: NOAH Connections: Teens |
| Wednesday, November 16th: NOAH Connections: Young Adults | Thursday, November 17th: NOAH Connections: Adults |
Announcing: NOAH’s 40th Birthday Fundraiser Challenge!
Join us for a fundraiser challenge in honor of NOAH’s 40th Birthday! To celebrate all that NOAH has provided to the albinism community in the past 40 years, we are asking 40 community members to start a FB fundraiser as part of our challenge.
Help us reach our goal of 40 fundraisers – create yours today!
Takeover Tuesday TOMORROW!
Mackenzie’s Takeover Tuesday is TOMORROW, and we can’t wait!
Tune in to NOAH’s social media story to check out a day in Mackenzie’s life as a college athlete who is also involved in theater, choir, student government, disability advocacy, and more!
Would you like to share a day in YOUR life on NOAH social media? Send a message to Emily at eaubrey@albinism.org with a little bit of info about yourself for the chance to be featured in a future takeover!
Published: October 10, 2022
LatinX & Hispanic Heritage Month!
NOAH Community member, Sarvia C., shared a family photo in honor of Hispanic & LatinX Heritage Month!
Check it out at www.albinism.org/heritage
Hispanic & LatinX PWAs – how do you stay connected to your heritage or honor your culture? Send a story, photo, or video to eaubrey@albinism.org to be featured on the NOAH Website and social media during LatinX & Hispanic Heritage Month and beyond.
Published: October 10, 2022
Sukkot
Chag Sameach to all in our community celebrating Sukkot!
Published: October 10, 2022
NOAH Night ~ This Saturday!
NOAH Night: A Cause for Celebration is a virtual gathering where people with albinism, families, and friends of NOAH will join together in celebration of NOAH’s 40th birthday! Join us for an evening that has something for everyone – a VIP social hour to kick things off, a showcase of NOAH community talent, a look at NOAH through the years, and an after-party for everyone!!
Learn more about NOAH Night at www.albinism.org/NOAHNight
Do You Have Tickets to NOAH Night?!
NOAH Night is this Saturday, and we can’t wait to celebrate the albinism community with our hosts Marleena Barber & Casey Greer (and special guest Rupert!).
Get YOUR tickets today: www.albinism.org/NOAHNight
Published: October 10, 2022
Check out more information about NOAH Night and get your tickets now at: www.albinism.org/NOAHNight
Published: October 10, 2022
Art Contest Winners Announced at NOAHNight!
In honor of NOAH’s 40th birthday, Spiffy hosted an Art Contest open to kids & teens with albinism. Many talented artists submitted Spiffy’s coloring sheet or freestyle artwork, and we can’t wait to share the winners’ creations at NOAH Night!
Get your tickets today!
www.albinism.org/NOAHNight/
Published: October 10, 2022
NOAH Events This Week!
Thursday: Teen Connections
October 13th at 8:00pm ET // 5:00pm PT
Teens – join us for a special session of NOAH Connections this Thursday at 8pm ET // 5pm PT. Kelsey Thompson will be presenting her popular session – Stares, Smirks, and Shout-outs!
New to the group? Sign up today!
www.albinism.org/NOAH-Connections/#teens
Published: October 10, 2022
Saturday: NOAH Night
October 15th at 8:00pm ET // 5:00pm PT
Friends of NOAH – we can’t wait to see you this weekend to celebrate NOAH’s 40th birthday and the albinism community.
What are you waiting for? Get your tickets to NOAH Night now!
www.albinism.org/NOAH-Connections/#young-adults
Published: October 10, 2022
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: October 10, 2022
| Tuesday, October 18th: NOAH Connections: Aging with Albinism | Wednesday, October 19th: NOAH Connections: Young Adults |
| Thursday, October 20th: NOAH Connections: Adults | Thursday, October 27th: NOAH Connections: Teens |
| Wednesday, November 2nd: NOAH Connections: Young Adults | Wednesday, November 2nd: NOAH Connections: Young Adults |
| Wednesday, November 3rd: NOAH Connections: Adults | Monday, November 7th: NOAH Workshops: Parents & Caregivers |
| Tuesday, November 8th: NOAH Connections: Parenting without Pigment |
Here Comes the Autumn Issue of Albinism InSight!
The Autumn Issue of Albinism InSight is hitting mailboxes and inboxes…is your subscription up to date?
Don’t miss out, subscribe today!
www.albinism.org/AI
Hispanic & LatinX Heritage Month
NOAH Community member, Gabriella S., shared a photo with her siblings & mom in honor of LatinX & Hispanic Heritage Month!
Check it out at www.albinism.org/heritage
Hispanic & LatinX PWAs – how do you stay connected to your heritage or honor your culture? Send a story, photo, or video to eaubrey@albinism.org to be featured on the NOAH Website and social media during LatinX & Hispanic Heritage Month and beyond.
Published: October 3, 2022
Happy Blind Sports Week!
USABA’s National Blind Sports Week is this week, and we can’t wait to check out the sessions & presentations they have planned!
Check out the details on their Facebook page: www.facebook.com/UnitedStatesABA
Published: October 3, 2022
October – World Bullying Prevention Month
Did you know that October is World Bullying Prevention Month?
World Bullying Prevention Month “encourages communities to work together to stop bullying and cyberbullying and put an end to hatred and racism by increasing awareness of the prevalence and impact of all forms of bullying on children of all ages.”
Learn more at: www.stompoutbullying.org/world-bullying-prevention-month
Published: October 3, 2022
Celebrate NOAH’s 40th Birthday!
NOAH Night: A Cause for Celebration is a virtual gathering where people with albinism, families, and friends of NOAH will join together in celebration of NOAH’s 40th birthday! Join us for an evening that has something for everyone – a VIP social hour to kick things off, a showcase of NOAH community talent, a look at NOAH through the years, and an after-party for everyone!!
Learn more about NOAH Night at www.albinism.org/NOAHNight
Get Your Tickets Today!
Hershula & Jayana are so excited for NOAH Night and we are too!
We hope to see YOU at NOAHNight on Saturday, October 15th at 8pm ET // 5pm PT to celebrate NOAH’s 40th birthday!!
Do you have your tickets yet? Don’t wait, get them today at: www.albinism.org/NOAHNight
www.albinism.org/NOAHNight/#talent
Published: October 3, 2022
NOAH Night: Red Carpet Update – Co-hosts!
First to arrive on the red carpet are our stylish co-hosts Marleena Barber & Casey Greer! Who will arrive next…?
Want to walk the red carpet? Send your full-body photo to marketing@albinism.org!
www.albinism.org/NOAHNight
Published: October 3, 2022
NOAH Night: Red Carpet Update – Special Guest!
Who is that coming down the red carpet?! It’s NOAH’s favorite fundraising friend, and NOAH Night special guest, Spiffy!!
Want to walk the red carpet? Send your full-body photo to marketing@albinism.org!
www.albinism.org/NOAHNight
Published: October 3, 2022
NOAH Events This Week!
TODAY: Parents of Newly-Diagnosed Children Workshop
October 3rd at 8:30pm ET // 5:30pm PT
Registered Attendees – join Sheila Adamo TONIGHT to become part of a community that will share and learn about adapting to your new albinism journey.
Learn more about upcoming workshop offerings at:
www.albinism.org/workshops
Published: October 3, 2022
Wednesday: Young Adult Connections
October 5th at 9:00pm ET // 6:00pm PT
Young adults, you’re up next! Join us this Wednesday at 9pm ET // 6pm PT to connect with fellow PWAs.
New to the group? There’s still time to join!
www.albinism.org/NOAH-Connections/#young-adults
Published: October 3, 2022
Thursday: Adult Connections
October 6th at 9:00pm ET // 6:00pm PT
Awkward Moments!
Adults with albinism, join us this Thursday at 9pm ET // 6pm PT to share your most awkward, funny, or embarrassing moments as a PWA.
www.albinism.org/NOAH-Connections/#adults
Published: October 3, 2022
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: October 3, 2022
| Thursday, October 13th: NOAH Connections: Teens | Tuesday, October 18th: NOAH Connections: Aging with Albinism |
| Wednesday, October 19th: NOAH Connections: Young Adults | Thursday, October 20th: NOAH Connections: Adults |
| Thursday, October 27th: NOAH Connections: Teens | Wednesday, November 2nd: NOAH Connections: Young Adults |
| Wednesday, November 3rd: NOAH Connections: Adults | Monday, November 7th: NOAH Workshops: Parents & Caregivers |
| Tuesday, November 8th: NOAH Connections: Parenting without Pigment |
Takeover Tuesday – TOMORROW!
We’re so excited that Iida will be taking over our social media TOMORROW! Don’t miss out – make sure you’re following NOAH on Facebook & Instagram to catch a day in Iida’s life as a solo traveler with albinism.
Would you like to share a day in YOUR life on NOAH social media? Send a message to Emily at eaubrey@albinism.org with a little bit of info about yourself for the chance to be featured in a future takeover!
Fundraiser Shout-out!
NOAH Grandparent, Brenda Schnitker, promoted Albinism Awareness Day, June 13th, to her Mary Kay customers. From all sales in the month of June, she donated 25% to NOAH in honor of her granddaughter, Olivia.
Thank you, Brenda!!
Published: September 26, 2022
Rosh Hashanah
Wishing a happy Rosh Hashanah to all in our community who celebrate!
Published: September 26, 2022
Celebrate NOAH’s 40th Birthday!
NOAH Night: A Cause for Celebration is a virtual gathering where people with albinism, families, and friends of NOAH will join together in celebration of NOAH’s 40th birthday! Join us for an evening that has something for everyone – a VIP social hour to kick things off, a showcase of NOAH community talent, a look at NOAH through the years, and an after-party for everyone!!
Learn more about NOAH Night at www.albinism.org/NOAHNight
Last Chance to Submit Your Talent!
Celebrate NOAH’s 40th birthday with a showcase of talent!
We know you have the skills, join us to inspire others.
Submit a video demonstrating your abilities by TODAY (Monday, September 26th) for an opportunity to take part in our NOAH Night Talent Show on October 15th.
Submit your talent today!
www.albinism.org/NOAHNight/#talent
Published: September 26, 2022
Get Your Tickets Today!
Hershula & Jayana are so excited for NOAH Night and we are too!
We hope to see YOU at NOAH Night on Saturday, October 15th at 8pm ET // 5pm PT to celebrate NOAH’s 40th birthday!!
Do you have your tickets yet? Don’t wait, get them today at: www.albinism.org/NOAHNight
Published: September 26, 2022
Spiffy’s Art Contest!
In honor of NOAH’s 40th birthday, Spiffy is having an Art Contest open to kids & teens with albinism. Artists can submit a Spiffy Coloring Page, or freestyle artwork.
Contest winners will be announced at the NOAH Night celebration, and featured in a future issue of Albinism InSight!
Learn more and submit YOUR artwork by October 1st:
www.albinism.org/NOAHNight/#spiffy
Published: September 26, 2022
Calling All White Cane Users!
In addition to being NOAH’s 40th Birthday & our NOAH Night Celebration, October 15th is also White Cane Day! In honor of this occasion, we are compiling photos and videos of white cane users in our community to be shared as part of a special feature at NOAH Night!
If you’d like the chance to be included in this special feature, upload your photos or videos to our White Cane Day album by October 1st:
Published: September 26, 2022
NOAH Events This Week!
Tuesday: Parenting without Pigment
September 27th at 9:00pm ET // 6:00pm PT
Huddle up with your fellow Parents without Pigment tomorrow at 9pm ET // 6pm PT as we chat about kids in sports. We’ll cover topics from getting the right equipment to getting to the game, and of course, we’ll chat about actually seeing your kiddo in action! Bring your wisdom and questions to help us kick off another exciting NOAH Connection!
New to the group?
Join now for the link to this call, and you’ll get the invite future calls too!
www.albinism.org/NOAH-Connections/#pwp
Published: September 26, 2022
Thursday: Teen Connections
September 29th at 8:00pm ET // 5:00pm PT
Teens with albinism, join us this Thursday at 8pm ET // 5pm PTto connect and chat with your PWA pals.
New to the group? Sign up today and we’ll send you info for this call as well as email reminders for future sessions!
www.albinism.org/NOAH-Connections/#teens
Published: September 26, 2022
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Published: September 26, 2022
Monday, October 3rd: NOAH Workshops: Parents & Caregivers | Wednesday, October 5th: NOAH Connections: Young Adults |
| Thursday, October 6th: NOAH Connections: Adults | Thursday, October 13th: NOAH Connections: Teens |
| Tuesday, October 18th: NOAH Connections: Aging with Albinism | Wednesday, October 19th: NOAH Connections: Young Adults |
| Thursday, October 20th: NOAH Connections: Adults |
Takeover Tuesday – Highlight!
Did you miss Yasmine’s awesome takeover this past Tuesday? No worries! We’ve saved her takeover in the highlights on NOAH’s Instagram profile.
Check it out at: www.instagram.com/noahalbinism
Would you like to share a day in YOUR life on NOAH social media? Send a message to Emily at eaubrey@albinism.org with a little bit of info about yourself for the chance to be featured in a future takeover!
LatinX & Hispanic Heritage Month!
NOAH Community member, Kathi Garza, shares some of her experiences growing up in a Mexican American family, and how she stays connected to her cultural identity now.
Check it out at www.albinism.org/heritage
Hispanic & LatinX PWAs – how do you stay connected to your heritage or honor your culture? Send a story, photo, or video to eaubrey@albinism.org to be featured on the NOAH Website and social media during LatinX & Hispanic Heritage Month and beyond.
Published: September 19, 2022
Calling All Parents with Albinism!
Huddle up with your fellow Parents without Pigment on Tuesday, September 27th at 9pm ET // 6pm PT as we chat about kids in sports. We’ll cover topics from getting the right equipment to getting to the game, and of course, we’ll chat about actually seeing your kiddo in action!. Bring your wisdom and questions to help us kick off another exciting NOAH Connection!
New to the group?
Join now for the link to this call, and you’ll get the invite future calls too!
www.albinism.org/NOAH-Connections/#pwp
Published: September 19, 2022
Celebrate NOAH’s 40th Birthday at NOAH Night!
NOAH Night: A Cause for Celebration is a virtual gathering where people with albinism, families, and friends of NOAH will join together in celebration of NOAH’s 40th birthday! Join us for an evening that has something for everyone – a VIP social hour to kick things off, a showcase of NOAH community talent, a look at NOAH through the years, and an after-party for everyone!!
Learn more about NOAH Night at www.albinism.org/NOAHNight
One Week Left to Submit Your Talent!
Celebrate NOAH’s 40th birthday with a showcase of talent!
We know you have the skills, join us to inspire others.
Submit a video demonstrating your abilities by Monday, September 26th for an opportunity to take part in our NOAH Night Talent Show on October 15th.
Submit your talent today!
www.albinism.org/NOAHNight/#talent
Published: September 19, 2022
NOAH Night Tickets Now Available!!
NOAH Night is just around the corner, and we can’t wait to celebrate the albinism community with our hosts Marleena Barber & Casey Greer (and special guest Rupert!).
Get YOUR tickets today: www.albinism.org/NOAHNight
albinism.org/NOAHNight/#sponsor
Published: September 19, 2022
- Colleagues at the University of Iowa Hospitals & Clinics and the National Advanced Driving Simulator are looking for volunteers who are required to wear a bioptic telescope while driving to participate in a research study.
For more information, visit: www.albinism.org/research/#u-iowa - NOAH community member, Marleena Barber, is having a free performance of her one-woman cabaret show, Thank You For the Music, Saturday, October 1st at 2pm. The performance and talk with the artist will be held at Positive Exposure 109 in NYC.
For more details or to RSVP: http://albinism.org/wp-content/uploads/2022/09/Thank-you-for-the-music-Poster.pdf
NOAH Events This Week!
Tuesday: Aging with Albinism
September 20th at 5:00pm ET // 3:00pm PT
Join June Waugh and friends for our next session of NOAH Connections: Aging with Albinism tomorrow, Tuesday, September 20th at 5pm ET // 2pm PT.
New to the group? There’s still time to sign up!
www.albinism.org/NOAH-Connections/#aging
Published: September 19, 2022