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, 2022
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.
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.
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.
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!
Check out the great opportunities to connect this week!
Published: January 17, 2022
💡 Do you know a PWA or community member who might want to join a NOAH Connections group that you are a part of? Invite them to visit our page and sign up for session reminders! www.albinism.org/NOAH-Connections
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.
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.
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!
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!
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!
Check out the great opportunities to connect this week!
Published: January 9, 2022
💡 Do you know a PWA or community member who might want to join a NOAH Connections group that you are a part of? Invite them to visit our page and sign up for session reminders! www.albinism.org/NOAH-Connections
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.
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:
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, 2022
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!
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:
Check out the great opportunities to connect this week!
Published: January 2, 2022
💡 Do you know a PWA or community member who might want to join a NOAH Connections group that you are a part of? Invite them to visit our page and sign up for session reminders! www.albinism.org/NOAH-Connections
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.
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.
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.
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:
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/
Check out the great opportunities to connect this week!
Published: December 26, 2022
💡 Do you know a PWA or community member who might want to join a NOAH Connections group that you are a part of? Invite them to visit our page and sign up for session reminders! www.albinism.org/NOAH-Connections
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!
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.
Happy Hanukkah to all in our community who celebrate!
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.
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!
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!
Check out the great opportunities to connect this week!
Published: December 19, 2022
💡 Do you know a PWA or community member who might want to join a NOAH Connections group that you are a part of? Invite them to visit our page and sign up for session reminders! www.albinism.org/NOAH-Connections
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.
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
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.
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.
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
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!
Check out the great opportunities to connect this week!
Published: December 12, 2022
💡 Do you know a PWA or community member who might want to join a NOAH Connections group that you are a part of? Invite them to visit our page and sign up for session reminders! www.albinism.org/NOAH-Connections
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!
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.
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!
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!
Check out the great opportunities to connect this week!
Published: December 5, 2022
💡 Do you know a PWA or community member who might want to join a NOAH Connections group that you are a part of? Invite them to visit our page and sign up for session reminders! www.albinism.org/NOAH-Connections
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.
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!
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!
Check out the great opportunities to connect this week!
Published: November 28, 2022
💡 Do you know a PWA or community member who might want to join a NOAH Connections group that you are a part of? Invite them to visit our page and sign up for session reminders! www.albinism.org/NOAH-Connections
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!
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.
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.
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.
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!
Check out the great opportunities to connect this week!
Published: November 21, 2022
💡 Do you know a PWA or community member who might want to join a NOAH Connections group that you are a part of? Invite them to visit our page and sign up for session reminders! www.albinism.org/NOAH-Connections
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!
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!
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
Published: November 14, 2022
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.
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.
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!
Check out the great opportunities to connect this week!
Published: November 14, 2022
💡 Do you know a PWA or community member who might want to join a NOAH Connections group that you are a part of? Invite them to visit our page and sign up for session reminders! www.albinism.org/NOAH-Connections
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.
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.
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.
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!
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.
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.
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!
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!
Check out the great opportunities to connect this week!
Published: November 7, 2022
💡 Do you know a PWA or community member who might want to join a NOAH Connections group that you are a part of? Invite them to visit our page and sign up for session reminders! www.albinism.org/NOAH-Connections
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.
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.
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!
Check out the great opportunities to connect this week!
Published: October 31, 2022
💡 Do you know a PWA or community member who might want to join a NOAH Connections group that you are a part of? Invite them to visit our page and sign up for session reminders! www.albinism.org/NOAH-Connections
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.
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!
Published: October 24, 2022
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?
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.
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!
Check out the great opportunities to connect this week!
Published: October 24, 2022
💡 Do you know a PWA or community member who might want to join a NOAH Connections group that you are a part of? Invite them to visit our page and sign up for session reminders! www.albinism.org/NOAH-Connections
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!
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!
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.
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!
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.
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!
Check out the great opportunities to connect this week!
Published: October 17, 2022
💡 Do you know a PWA or community member who might want to join a NOAH Connections group that you are a part of? Invite them to visit our page and sign up for session reminders! www.albinism.org/NOAH-Connections
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!
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.
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!
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!
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!
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!!
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!).
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!
Check out the great opportunities to connect this week!
Published: October 10, 2022
💡 Do you know a PWA or community member who might want to join a NOAH Connections group that you are a part of? Invite them to visit our page and sign up for session reminders! www.albinism.org/NOAH-Connections
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!
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!
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.”
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!!
Check out the great opportunities to connect this week!
Published: October 3, 2022
💡 Do you know a PWA or community member who might want to join a NOAH Connections group that you are a part of? Invite them to visit our page and sign up for session reminders! www.albinism.org/NOAH-Connections
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.
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!
Published: September 26, 2022
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!!
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.
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!
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:
Check out the great opportunities to connect this week!
Published: September 26, 2022
💡 Do you know a PWA or community member who might want to join a NOAH Connections group that you are a part of? Invite them to visit our page and sign up for session reminders! www.albinism.org/NOAH-Connections
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!
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: September 19, 2022
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.
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!
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!!
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!).
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!
Check out the great opportunities to connect this week!
Published: September 19, 2022
💡 Do you know a PWA or community member who might want to join a NOAH Connections group that you are a part of? Invite them to visit our page and sign up for session reminders! www.albinism.org/NOAH-Connections
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.
Join NOAH Executive Director, Karen Bly and the NOAH Research Program Committee, for a special NOAH Connections Coffee Chat about the NOAH Research Program on Tuesday, September 20th at 8pm ET // 5pm PT.
Join Sarah Kane & Derek Schindelman for social time with fellow PWAs in the STEM Fields, Sunday, September 25th at 5pm ET // 2pm PT. We can’t wait to see you there!
We’re so excited that Yasmine 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 Yasmine’s life as a college student 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!
Published: September 12, 2022
LatinX & Hispanic Heritage Month!
Calling All LatinX & Hispanic PWAs!
LatinX & Hispanic Heritage Month is just around the corner, and we want to hear from YOU.
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 12, 2022
You’re Invited to a NOAH Research Program Coffee Chat!
Join NOAH Executive Director, Karen Bly and the NOAH Research Program Committee, for a special NOAH Connections Coffee Chat about the NOAH Research Program on Tuesday, September 20th at 8pm ET // 5pm PT.
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!!
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!).
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!
Calling all PWAs! Do you have a noteworthy talent that makes YOU uniquely you? Share your skills in our talent showcase, NOAH Has Talent!, during our NOAH Night celebration on October 15th.
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: https://bit.ly/3DjlIJt
Published: September 12, 2022
NOAH Events This Week!
Check out the great opportunities to connect this week!
Published: September 12, 2022
💡 Do you know a PWA or community member who might want to join a NOAH Connections group that you are a part of? Invite them to visit our page and sign up for session reminders! www.albinism.org/NOAH-Connections
TONIGHT: Grandparent Connections
September 12th at 8:00pm ET // 5:00pm PT
Calling all grandparents!
Join Sherry Dinner & Rick Hrach for an open forum discussion just for grandparents TONIGHT at 8:00pm ET // 5:00pm PT!
Tuesday: Supporting the Psychosocial Well-Being of Children and Youth with Albinism
September 13th at 9:00pm ET // 6:00pm PT
Parents, caregivers, educators, clinicians, and others – join Jocelyn Leworthy this Tuesday, September 13th at 9pm ET // 6pm PT to learn about ways to support the psychosocial well-being of children & youth with albinism. This session will offer an overview of psychosocial development, as well as interactive activities and discussion.
Calling all PWAs! Do you have a noteworthy talent that makes YOU uniquely you? Share your skills in our talent showcase, NOAH Has Talent!, during our NOAH Night celebration on October 15th.
We are so excited to share that Yasmine Straker will be kicking off our social media takeover series on Tuesday, September 13th…which just so happens to be her birthday!
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: August 29, 2022
New Date – Workshop Rescheduled!
Parents & Caregivers – join Sheila Adamo on Tuesday, September 27th to become part of a community that will share and learn about adapting to your new albinism journey.
It’s that time of the year again…and we know many of our community members are back to school already. So, if you’re back in class (educators too!), show us your best back to school pics on our recent Facebook Post!
Published: August 29, 2022
Mark Your Calendar!
Parents & Caregivers – join Sheila Adamo on Thursday, September 15th to become part of a community that will share and learn about adapting to your new albinism journey.
NOAH community members Casey & Cassandra host the Rare with Flair podcast, and they recently released a NOAHCon recap episode. Check it out! https://rarewithflair.com/noahcon22/
Have you seen this article about NOAH community member, Rebecca Rosenberg? Rebecca founded ReBokeh, an app which increases accessibility for those with moderate visual impairment.https://ventures.jhu.edu/news/student-founders-disabilities/
NOAH Events This Week!
Check out the great opportunities to connect this week!
Published: August 29, 2022
💡 Do you know a PWA or community member who might want to join a NOAH Connections group that you are a part of? Invite them to visit our page and sign up for session reminders! www.albinism.org/NOAH-Connections
Tuesday: Parenting without Pigment
August 30th at 9:00pm ET // 6:00pm PT
Calling all parents without pigment!!
Join Marleena Barber on Tuesday at 9pm ET // 6pm PT to discuss the support systems we have as parents with albinism.
If you missed the popular Life Hacks session at NOAHCon2022, or you’d like to experience it again, sign up for the encore presentation of this crowd-favorite session today!
Liz Schafer and Cassandra Mendez will be sharing their best tips and tricks for life as a PWA on Thursday at 9pm ET // 6pm PT.
If you missed the popular Life Hacks session at NOAHCon2022, or you’d like to experience it again, sign up for the encore presentation of this crowd-favorite session today!
Liz Schafer and Cassandra Mendez will be sharing their best tips and tricks for life as a PWA on Thursday, September 1st at 9pm ET // 6pm PT.
Parents & Caregivers – join Sheila Adamo on Thursday, September 15th to become part of a community that will share and learn about adapting to your new albinism journey.
Parents of kids with albinism middle/high school, or transitioning to college – check out the Lighthouse Guild’s upcoming Tele-Support Group – Adapting as our Children Grow. The next session will be held September 22nd at 8:30pm ET // 5:30pm PT.More details: http://albinism.org/wp-content/uploads/2022/08/email-lighthouse-2nd.pdf
NOAH Events This Week!
Check out the great opportunities to connect this week!
Published: August 22, 2022
💡 Do you know a PWA or community member who might want to join a NOAH Connections group that you are a part of? Invite them to visit our page and sign up for session reminders! www.albinism.org/NOAH-Connections
Wednesday: Young Adult Connections
August 24th at 9:00pm ET // 6:00pm PT
Calling all young adults with albinism!
Don’t miss out on your next chance to connect with fellow PWAs – join us this Wednesday at 9pm ET // 6pm PT!
Wednesday, September 21st: NOAH Connections: Young Adults
Thursday, September 22nd: NOAH Connections: Adults
National Eye Exam Month
August is National Eye Exam Month, so we’re thinking of the awesome optometrists & ophthalmologists that help care for the eyes of PWAs everywhere.
Do you have an awesome eye doctor? Shout them out on our recent Facebook post!
Published: August 15, 2022
Congratulations, Prize Winners!
Join us in congratulating Alicia C., Hollie W., and Benjamin F., who are the winners of Spiffy’s Scavenger Hunt prize drawing at NOAHCon22! Each prize winner will receive a voucher for $50 off registration for a future NOAH event.
Thank you to everyone who played Spiffy’s Scavenger Hunt at the NOAH conference!
Published: August 15, 2022
NOAH Helps Grandparents Connect!
In addition to providing social and educational sessions and workshops for grandparents, NOAH also helps put grandparents in touch with others who truly understand the journey of grandparenting a child with albinism.
Encourage your grandparents to send a message to grandparents@albinism.org to be connected with fellow grandparents in the NOAH community.
Published: August 15, 2022
It’s Easy to Create a Facebook Fundraiser for NOAH!
Starting a fundraiser takes just minutes, and the money raised helps us continue to provide programs and services to the community!
Follow the graphic to set up a fundraiser for NOAH today at:
Have you seen the new GapKids commercial? This recent ad highlights the interests and talents of many kids, including a drummer with albinism!Check it out: https://www.youtube.com/watch?v=fYolts75D20
Dr. Niya Pickett Miller (parent of a PWA, longtime NOAH volunteer and NOAHCon 2022 Keynote Address Speaker) is using research to illuminate albinism identity and communication, and she needs your help! If you would be willing to share your authentic story as a PWA or someone connected to albinism, please complete Dr. Pickett Miller’s brief survey at: https://docs.google.com/forms/d/1EsM65n5XcV9lTmVBlLB-RIH5Lk9onf_Dn38kaqu5QZA/viewform?edit_requested=true
Did you know that the US government recently expanded the availability of COVID test options for people who are blind or visually-impaired? Now, blind and low-vision users have the option to order Ellume COVID home tests, which provide audio instructions and test results through a smartphone app. For more info, visit: https://acl.gov/covid19/tests-people-who-are-blind-or-have-low-visionIf you would like to order tests, call 1-800-232-0233
NOAH Events This Week!
Check out the great opportunities to connect this week!
Published: August 15, 2022
💡 Do you know a PWA or community member who might want to join a NOAH Connections group that you are a part of? Invite them to visit our page and sign up for session reminders! www.albinism.org/NOAH-Connections
TODAY: Albinism and the Family Workshop
August 15th at 8:30pm ET // 5:30pm PT
Registered attendees – join Sheila Adamo tonight to deepen your understanding and provide solutions to common obstacles parents, grandparents and caregivers of children with albinism may face.
Join Sarah Kane & Derek Schindelman for social time with fellow PWAs in the STEM Fields, Saturday, August 20th at 5pm ET // 2pm PT. We can’t wait to see you there!
Parents & caregivers – we want to hear from YOU!
How do you/your child share info about albinism with their teachers or classmates at the beginning of the school year? Do you/they write a letter, make a presentation, or go a different route?
Submit your sample letters, presentations, ideas, etc. (including your child’s age/grade, and photos/videos if applicable!) to bts@albinism.org for the chance to be added to our Back to School Library!
Low Vision Driving Workshop Recording Now Available for Purchase!
Missed the LV Driving Workshop at NOAHCon22? No worries! The recording of this jam-packed day-long workshop is now available at the NOAH Online Store.
Purchase the recording today to check out sessions addressing the clinical low vision exam, bioptic telescopes, pre-driver readiness; behind-the-wheel training and testing; transportation as a non-driver; gaining control of transportation needs; how a bioptic driving bill becomes law, and more!
Parents, Grandparents, & Caregivers of children with albinism – join Sheila Adamo on Monday, August 15th to deepen your understanding and provide solutions to common obstacles parents, grandparents and caregivers of children with albinism may face.
Your favorite fundraising friend, Spiffy, has a special shout-out for the Kelly Family, who hosted a fundraising event and raised over $12,000 for NOAH! Way to go!!
Check out the options and create
YOUR fundraising page today: www.albinism.org/fundraisers
Published: August 8, 2022
Jasmine is a Star, a film following the journey of a determined 16-year-old girl with albinism, premiered last week at the BlackStar Film Festival! For more info about Jasmine is a Star and the BlackStar Film Festival, visit: https://www.blackstarfest.org/festival/events/jasmine-is-a-star-2/
Did you know that our friends at the HPS Network offer monthly support calls for people with HPS and their families? Check out their upcoming programming at https://www.hpsnetwork.org/member-connect-calls/ For more info, contact the HPS Network at info@hpsnetwork.org
NOAH Events This Week!
Check out the great opportunities to connect this week!
Published: August 8, 2022
💡 Do you know a PWA or community member who might want to join a NOAH Connections group that you are a part of? Invite them to visit our page and sign up for session reminders! www.albinism.org/NOAH-Connections
TODAY: NOAHCon Recap Panel
August 8th at 9:00pm ET // 6:00pm PT
Whether you were unable to attend the NOAH conference or you attended and would like to relive the experience, join us for a NOAHCon recap panel TONIGHT at 9pm ET // 6pm PT, featuring Liz Schafer, Erika Evans, Courtney Korb, and Dale Hamilton.
We will touch on the highlights, sessions, and things learned at the 2022 conference.
Whether you were unable to attend the NOAH conference or you attended and would like to relive the experience, join us for a NOAHCon recap panel TONIGHT at 9pm ET // 6pm PT, featuring Liz Schafer, Erika Evans, Courtney Korb, and Dale Hamilton.
We will touch on the highlights, sessions, and things learned at the 2022 conference.
Join us this Sunday, August 14th at 8pm ET // 5pm PT for our next session of NOAH Connections just for you!
New to the group? Sign up now for the invite to this call & we’ll send you email reminders for future opportunities to connect! www.albinism.org/NOAH-Connections/#lgbtq
Published: August 8, 2022
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Whether you were unable to attend the NOAH conference or you attended and would like to relive the experience, join us for a NOAHCon recap panel August 8th at 9pm ET // 6pm PT, featuring Liz Schafer, Erika Evans, Courtney Korb, and Dale Hamilton.
We will touch on the highlights, sessions, and things learned at the 2022 conference.
Whether you are a non-PWA looking to better understand a PWA’s vision, or a PWA interested in indulging in a conversation about how you see and the ways you communicate your vision to others, Elizabeth Schafer’s “How I See” is perfect for you!
This encore presentation of our NOAHCon22 session will include a series of paintings created by a PWA, an interactive activity, and a Q&A/discussion.
We hope you’ll join us on August 9th at 8pm ET // 5pm PT!
Parents, Grandparents, & Caregivers of children with albinism – join Sheila Adamo on Monday, August 15th to deepen your understanding and provide solutions to common obstacles parents, grandparents and caregivers of children with albinism may face.
Last Friday was the International Day of Friendship, so we celebrated the many friendships in the NOAH Community by sharing shout-outs to NOAH friends!
Give a shout-out to one of your NOAH friends (pics encouraged!) on our recent Facebook post!
Published: August 1, 2022
Did you know that last Tuesday was the 32nd anniversary of the Americans with Disabilities Act (ADA)? NOAH is proud to support this important civil rights law that works to ensure all people with disabilities have the same rights and opportunities as everyone else. To learn more, visit: www.adaanniversary.org/
Did You Know?! The Global Albinism Alliance recently announced the 2022 International Scientific Conference on Albinism – ISCA 2022, which will be held online November 16-19, 2022. Check out their recent post for more details! https://bit.ly/3zQiRpz
Join us in congratulating former UN independent expert on albinism, I.K. Ero, who was recently awarded an honorary Doctor of Laws degreefrom Lancaster University! https://bit.ly/3JjTJul
The United Nations Independent Expert on Albinism (UN IE), Muluka-Anne Miti-Drummond, is preparing a report for the next session of the UN General Assembly on people with albinism on the move. In support of this effort, the Global Albinism Alliance is conducting a survey to help gather information. If you have ever moved within your country for any reason(s) directly related to you or a family member’s albinism, the GAA encourages you to complete their Albinism and Moving Survey. https://bit.ly/3BBKBiO
NOAH Events This Week!
Check out the great opportunities to connect this week!
Published: August 1, 2022
💡 Do you know a PWA or community member who might want to join a NOAH Connections group that you are a part of? Invite them to visit our page and sign up for session reminders! www.albinism.org/NOAH-Connections
Thursday: Teen Connections
August 4th at 8:00pm ET // 5:00pm PT
Teens, you’re up next! Join us this Thursday at 8pm ET // 5pm PT for our next session of NOAH Connections just for you!
Adult PWAs, mark your calendars for our next Adults with Albinism Weekend, September 29 – October 1, 2023 in Minneapolis, MN!
Are you planning to join in on the fun? We hope so!
Published: July 25, 2022
See You in Orange County!
NOAHCon 2022 just ended, but we’re already looking forward to our next conference! Mark your calendars and get ready to join us in Orange County, California July 11-14, 2024!
Published: July 25, 2022
Remember Cat in the Hat and Gertrude McFuzz? These precious pups with albinism have officially arrived at their forever homes! Check out this recent video from Red Desert Doodles sharing their journey to meet their new owners: https://www.facebook.com/watch/?v=457678289510655&ref=sharing
Check out these photos of NOAH community members, Aiden & Nate M., who recently competed in the The Windy City Blind Hockey Showdown! https://bit.ly/3vf0EiK
NOAH Events This Week!
Check out the great opportunities to connect this week!
Published: July 25, 2022
💡 Do you know a PWA or community member who might want to join a NOAH Connections group that you are a part of? Invite them to visit our page and sign up for session reminders! www.albinism.org/NOAH-Connections
Wednesday: Young Adult Connections
July 27th at 9:00pm ET // 6:00pm PT
Young adults, you’re up next! We hope you’ll join us this Wednesday at 9:00pm ET // 6:00pm PT to connect and chat with your PWA pals!
Looking back at this weekend’s conference, we want to thank all of our awesome attendees who joined us for education, connection, and camaraderie in our first in-person conference in four years. As you think back on this jam-packed weekend, share a favorite memory (or two!) that made your conference experience memorable on our recent Facebook post.
Published: July 18, 2022
Thank You, Special Guests!
Join us in sending a special shout-out to our 6 special guests who shared their conference experience on NOAH’s social media this weekend.
Thank you Courtney, Gabriella, Sarah, Casey, Yasmine, and Jessica for taking time out of your day at NOAHCon to share your perspective and experience with our community!
Published: July 18, 2022
We Want YOU For Albinism InSight!
Submitting an article to Albinism InSight is a great way for you to share your knowledge and experience with the albinism community! Submissions are due this Wednesday, July 20th.
NOAH Ed U is a complimentary supplement of Albinism InSight geared specifically towards educators, and the Summer 2022 Issue is now available. Tell all of the teachers in your life to check it out today!
Check out this video feature on NOAH Community member, Elizabeth Schafer, and her work with Splashes of Hope, creating art installations at children’s hospitals! https://www.youtube.com/watch?v=0AWCXt761ho
NOAH Events This Week!
Check out the great opportunities to connect this week!
Published: July 18, 2022
💡 Do you know a PWA or community member who might want to join a NOAH Connections group that you are a part of? Invite them to visit our page and sign up for session reminders! www.albinism.org/NOAH-Connections
Thursday: Teen Connections
July 21st at 8:00pm ET // 5:00pm PT
Teens, get ready for our next session of NOAH Connections just for you! Join us this Thursday at 8pm ET // 5pm PT to connect and chat with fellow teens with albinism.
The NOAHCon 2022 conference schedule & more were sent via email on Friday! If this info-packed message didn’t reach you, send us a message at info@albinism.org.
Check out the great opportunities to connect this week!
Published: July 11, 2022
💡 Do you know a PWA or community member who might want to join a NOAH Connections group that you are a part of? Invite them to visit our page and sign up for session reminders! www.albinism.org/NOAH-Connections
THREE spots available for a free manuscript evaluation in advance of the 2022 NOAH Conference.
What: Submit 10-20 pages of your manuscript-in-progress of any genre and receive FREE written feedback followed by a 30-minute meeting at the NOAH conference in Orlando or via Zoom at a mutually decided time.
Who: My name is Emily Urquhart and I am a freelance journalist, writer, editor, and educator. I’ve published two works of nonfiction and a collection of essays that will be out this fall. I’m also the parent of a child with albinism, and I’ve been a parent liaison with NOAH for the past four years.
Join us in sending a special shout-out to New Parent Toolkit Donor, Banz! Thank you, Banz, for donating your careware for kids to families with newly-diagnosed children with albinism.
Check out the great opportunities to connect this week!
Published: June 27, 2022
💡 Do you know a PWA or community member who might want to join a NOAH Connections group that you are a part of? Invite them to visit our page and sign up for session reminders! www.albinism.org/NOAH-Connections
Wednesday: Young Adult Connections
June 29th at 9:00pm ET // 6:00pm PT
Young adults, you’re up next! Join us to share experiences and connect with fellow PWAs.
“The historical legacy of Juneteenth shows the value of never giving up hope in uncertain times.”
On this day commemorating the end of slavery in the US, NOAH celebrates the freedom, accomplishments, and contributions of Black individuals to our NOAH community.
Join us in sending a special shout-out to the NI NOAH and South Chicagoland & NW Indiana IAAD Walk groups, who both hosted events last weekend! Thank you for spreading albinism awareness and raising funds for NOAH.
Join us in giving a special shout-out to our NOAHCon 2022 Opening Session Sponsor, Epstein | Ostrove!
Do you know a company that would benefit from exposure at NOAHCon? Help us spread the word of limited sponsorship opportunities available! www.albinism.org/NOAHCon/sponsor
Published: June 20, 2022
Fundraiser Shout-Out!
Join us in sending a special shout-out to Marleena, Kathi, Caroline, Betty, Karen, Casey, & Cassandra who are all participating in our Adopt-A-Day Countdown to NOAHCon Fundraiser!
Are you working on filling your calendar? Let us know on our recent Facebook Post.
Thanks to these awesome fundraisers, Spiffy is getting closer to Orlando! If you haven’t started your calendar, it’s not too late to help Spiffy on his journey! Check it out today: www.albinism.org/fun/adopt-a-day
Published: June 20, 2022
Congratulations, Mackenzie!
NOAH is delighted to announce that Mackenzie Strong has been selected as the honorable mention applicant for the 2022 Michael J. McGowan Leadership Scholarship Award.
Mackenzie is a rising junior at Illinois College, where she is studying secondary education and history, with a minor in political science.
NOAH community member, Colleen Young, earned her 4th gold medal of the night and set an American record in the Women’s 100M Breaststroke SB13 at the 2022 Para Swimming World Championships last week. Congratulations, Colleen! https://bit.ly/3tOijNo
NOAH Events This Week!
Check out the great opportunities to connect this week!
Published: June 20, 2022
💡 Do you know a PWA or community member who might want to join a NOAH Connections group that you are a part of? Invite them to visit our page and sign up for session reminders! www.albinism.org/NOAH-Connections
Tuesday: Parenting without Pigment
June 21st at 9:00pm ET // 6:00pm PT
Calling All Parents without Pigment!
Join Robin French this Tuesday, June 21st at 9pm ET // 6pm PT to share your worst & funniest parenting stories!
Teen PWAs – school’s out, and we can’t wait to kick off summer with YOU! Join us this Thursday at 8pm ET // 5pm PT to start summer relaxation with your friends with albinism.
Learn more about the magic of NOAH’s Biennial National Conference & register today at: www.albinism.org/NOAHCon
Happy International Albinism Awareness Day!
We hope you’ll join us TONIGHT at 8pm ET // 5pm PT for NOAH’s IAAD celebration on Gatherly. All friends of NOAH are welcome to join, so RSVP now & get ready for games and fun with the albinism community!
Want to spread albinism awareness and support NOAH but not sure where to start? Join us for the Adopt-a-Day Fundraiser!
Download your own calendar and collect donations in the amount listed to “adopt” each day as we celebrate albinism in a “Countdown to NOAHCon!” Everyone who fills their calendar will have the chance to win a NOAH Prize Pack!
The conference is fast approaching! Here’s an easy way to give back, whether or not you are attending the conference. NOAH is looking for donations to the silent auction. If you have a great item you would like to donate or know someone you can ask to donate an item in support of NOAH, please let the silent auction team know. All funds go to support NOAH.
Ideal donations are those you would like to bid on. Donations should be new or homemade items such as, electronics, gift certificates, children’s items. For further information please contact auction@albinism.org
Published: June 13, 2022
Limited Late Registrations Available!
We are excited to share that a limited number of adult late registrations will be accepted through June 22nd!
NOAH community member, Ashley J. Hicks, was recently cast in the 2022 Disney Television Discovers: Talent Showcase. Congratulations, Ashley! https://www.instagram.com/p/CeebpnfuOn1/
FYI: Submissions for the Rare Artist Program are now Open!The Rare Artist Contest provides a national platform for rare artists to showcase their artwork and highlight their stories.Learn more or submit your art at: https://everylifefoundation.org/rare-artist/
NOAH Events This Week!
Check out the great opportunities to connect this week!
Published: June 13, 2022
💡 Do you know a PWA or community member who might want to join a NOAH Connections group that you are a part of? Invite them to visit our page and sign up for session reminders! www.albinism.org/NOAH-Connections
TODAY: IAAD Party on Gatherly!
June 13th at 8:00pm ET // 5:00pm PT
Join us on Gatherly for a virtual IAAD celebration with the NOAH Community, TONIGHT at 8pm ET // 5pm PT.
Adults with albinism, join special guest host, Erika Evans, this Thursday for our next session of Adult NOAH Connections. We can’t wait to see you there!
Learn more about the magic of NOAH’s Biennial National Conference & register today at: www.albinism.org/NOAHCon
Announcing: NOAH’s Adopt-a-Day Fundraiser!
Want to spread albinism awareness and support NOAH but not sure where to start? Join us for the Adopt-a-Day Fundraiser!
Download your own calendar and collect donations in the amount listed to “adopt” each day as we celebrate albinism in a “Countdown to NOAHCon!” Everyone who fills their calendar will have the chance to win a prize!
Join us in giving a special shout-out to our NOAHCon 2022 Welcome Reception Sponsor, Under the Same Sun!
Do you know a company that would benefit from exposure at NOAHCon? The sponsorship deadline has passed, but we still have limited sponsorship opportunities available.
On Friday, June 10th the HPS Network will be hosting an interactive virtual event devoted entirely to listening and learning from patients & caregivers living with HPS.
All NOAH community members are encourage to attend to support the HPS Network & our community members with HPS!
NOAH’s New Parent Program is in need of books for New Parent Toolkits and we need YOUR help. If you’d like to purchase a book (or a few!) to donate to this program, check out our Amazon Charity List:
Join us in congratulating NOAH Board Vice Chair Elliot Ostrove for being recognized by NJBIZ for his leadership in the legal community. NOAH is so fortunate that Elliot shares his time and talents as a dedicated volunteer. https://bit.ly/3tjia49
FYI: Access to Resources in Individuals with Albinism Study – Researchers at the Medical College of Wisconsin are conducting an anonymous research survey to learn more about access to genetic testing, vision care, and other resources for individuals with albinism. Respondents ages 18+, or parents/guardians of minors, who have been diagnosed with albinism, wanted for survey study. For more information or to take the survey visit: https://redcap.mcw.edu/surveys/?s=43XCTF43EK
NOAH Events This Week!
Check out the great opportunities to connect this week!
Published: June 6, 2022
💡 Do you know a PWA or community member who might want to join a NOAH Connections group that you are a part of? Invite them to visit our page and sign up for session reminders! www.albinism.org/NOAH-Connections
Thursday: Teen Connections
June 9th at 8:00pm ET // 5:00pm PT
Teens, you’re up next! Join us this Thursday for our next session of NOAH Connections just for you.