Three families of color share their narratives about raising children without melanin. Join us on Wednesday, May 25th at 8pm ET // 5pm PT to hear how our advocacy, mindset, support and strength makes albinism accepted and beautiful to ALL!
Positive Exposure’s traveling exhibit is at Dartmouth Hitchcock in Lebanon, NH. NOAH co-founder and NH resident Lee Laughlin was honored to watch Rick’s Grand Rounds presentation to the Dartmouth Health community. NH and VT residents can visit the exhibit, until June 10th in the Main Lobby. Check out this photo of Lee & Rick at the exhibit: https://www.facebook.com/photo/?fbid=370229185147190&set=a.361146106055498
NOAH Events This Week!
Check out the great opportunities to connect this week!
Published: May 16, 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
May 18th at 9:00pm ET // 6:00pm PT
Young adults, join us to play Jackbox games with your PWA pals! Make sure to have two devices – one for zoom, and one for games.
LGBTQ+ and Allies, join us for our next session of NOAH Connections just for YOU, this Sunday at 8pm ET // 5pm PT.
New to the group? Sign up today for info on joining this call, and you’ll get email reminders for future chances to connect, too! www.albinism.org/NOAH-Connections/#lgbtq
Published: May 16, 2022
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Get to know NOAH board members with rapid fire questions in this special edition of Bly on the Fly.
Up first, we have Donna Appell, RN, who is the founder and president of the Hermansky-Pudlak Syndrome (HPS) Network. Donna serves on NOAH’s Board of Directors and Board of Scientific Advisors.
Check out the great opportunities to connect this week!
Published: May 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
Thursday: Teen Connections
May 12th at 8:00pm ET // 5:00pm PT
Teens, you’re up next! We can’t wait to see YOU this Thursday for our next session of teen connections.
New to the group? Join today for the invite to this call, and we’ll send you email reminders for future chances to connect.
Join Casey and Caroline for a NOAH Kids Scavenger Hunt, this Saturday, May 14th at 2pm ET // 11am PT. Get ready to search around your house for all of the items…you may win a prize!
We are looking for awesome volunteers to lend a hand with the Teens & Tweens and Preschoolers at NOAHCon 2022. Don’t miss out on this chance to connect with awesome NOAH kids and make a difference.
We are excited to share that the theme for International Albinism Awareness Day 2022 is United in Making Our Voice Heard.
How do YOU plan to spread awareness and celebrate this IAAD? Share your plans on our recent Facebook post!
Published: May 2, 2022
NOAH Events This Week!
Check out the great opportunities to connect this week!
Published: May 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
Wednesday: Young Adult Connections
May 4th at 9:00pm ET // 6:00pm PT
Young adults, we can’t wait to “see” you this week for our next session of Young Adult Connections. Grab your devices and get ready for quality time with your friends with albinism!
Sign up today for the invite to this call, and we’ll send you email reminders for future chances to connect, too!
Did you know that there are two pre-conference workshops offered in addition to NOAHCon 2022 programming? Learn more about the Mothers’ Workshop and Low Vision Driving Workshop, and register today!
Do you want a commemorative finisher t-shirt from NOAH’s 2nd Annual SPF 3K-5K-10K? Don’t wait – sign up today!
Register by May 16th and select “Entry with Shirt” or “SPF Super Supporter with Shirt” to get your very own, stylish SPF race shirt! www.albinism.org/spf
Published: April 25, 2022
Applications Due this Sunday!
Know a young leader with albinism? Remind them to finish up their application…there are 6 days left to apply for the Michael J. McGowan Leadership Scholarship Award!
Foveal Hypoplasia Research Update: Researchers from the University of Leicester led an international effort examining the genes associated with arrested development of the fovea. They have created a grading scale for foveal hypoplasia, and linked it to diagnosis and prognosis. Learn more: https://medicalxpress.com/news/2022-04-multiple-genes-impact-vision-result.html
NOAH Events This Week!
Check out the great opportunities to connect this week!
Published: April 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
Thursday: Teen Connections
April 28th at 8:00pm ET // 5:00pm PT
Teens, you’re up next! Join us this Thursday for social time with your PWA pals.
Parents, Grandparents, & Caregivers of young children with albinism – join Sheila Adamo on Thursday, June 2nd to join a community that will share and learn about adapting to your new albinism journey.
Know a young leader with albinism? Remind them to finish up their application…there are 2 weeks leftto apply for the Michael J. McGowan Leadership Scholarship Award!
Thank you to the countless volunteers who offer their time, energy, and talents to help NOAH further its mission of providing acceptance, support, and fellowship for PWAs.
Published: April 18, 2022
Looking to Share a Room at NOAHCon?
If you’re interested in sharing a room to make NOAHCon 2022 more affordable, email info@albinism.orgto be placed on the room share contact list!
NOAH will facilitate introductions between individuals on the list (but is not providing roommate matching services).
Published: April 18, 2022
NOAH 2022 iPad Assistance Program
The 2022 NOAH iPad Assistance Program provides PWAs who do not have access to technology, the opportunity to receive an iPad.
Join us in congratulating long-time NOAH community member, Connie Curry, who is the first-ever repeat recipient of the Yvonne M. Dowlen Trophy at the Adult Champs figure skating competition: https://bit.ly/3KRqHSV
NOAH Events This Week!
Check out the great opportunities to connect this week!
Published: April 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
Tuesday: Aging with Albinism
April 19th at 5:00pm ET // 2:00pm PT
You’re invited to our next session of Aging with Albinism!
Join June Waugh and friends this Tuesday, April 19th at 5pm ET // 2pm PT.
Learn more about the magic of NOAH’s Biennial National Conference & register today at: www.albinism.org/NOAHCon
You’re Invited to the 2nd Annual SPF 3K-5K-10K!
We just got a letter from Spiffy, our favorite fundraising friend! Check out what he has to say:
“Dear Friend,
You’re invited to NOAH’s 2nd Annual SPF 3K-5K-10K! You can run, bike, hike, or do any activity you’d like.
It’s soooo easy to make a difference. Make a fundraising page today!
Love, Spiffy”
Want to join Spiffy for NOAH’s 2nd Annual SPF 3K-5K-10K? Sign up today! www.albinism.org/spf
Published: April 11, 2022
NOAHCon Keynote Address
NOAH is thrilled to share that NOAHCon 2022 will feature a Keynote Address by Dr. Niya Pickett Miller, “The Magic of Your story” Using Narratives to Empower Albinism Identity.
Join us in congratulating Principal Investigator Carol Ann Mason, PhD, who is an Established Researcher Program Grant Awardee.
Dr. Mason and team are conducting a study that “aims to reveal the causes of altered connections between the albino retina and the brain, which ultimately lead to poor stereo vision.”
Join us in congratulating NOAH community member, Megan Pitt, LMHC, who has taken on the new role of leading the Lighthouse Guild’s Tele Support Group for parents or caregivers of children with albinism.Learn more about Lighthouse Guild Tele Support: www.albinism.org/lg-telesupport
NOAH Events This Week!
Check out the great opportunities to connect this week!
Published: April 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
Wednesday: Parenting without Pigment
April 13th at 9:00pm ET // 6:00pm PT
Calling All Parents Without Pigment!
Join Marleena Barber this Wednesday for a special session of Adults with Albinism: Parenting without Pigment to discuss tips and tricks for self-care this spring.
Learn more about the magic of NOAH’s Biennial National Conference & register today at: www.albinism.org/NOAHCon
Conference Volunteers Needed!
Many different talents are required to hold a NOAH conference, and YOU might have what it takes to be the perfect volunteer. Take a look at the NOAHCon 2022 volunteer opportunities and please consider helping to make NOAH magic!
NOAH has been working hard to keep the albinism community connected, and we need YOUR help to continue our mission. Join us to celebrate you, your child, family member, friend, and our community!
Join us in congratulating Principal Investigators, Carol Ann Mason, PhD; Benoit Arveiler, PharmD, PhD; and Leah Byrne, PhD who are recipients of NOAH’s Inaugural Research Program Grants.
This program is made possible by the support of the Parker Hannifin Foundation.
Published: April 4, 2022
McGowan Leadership Scholarship – Where Are They Now?
Aidan O’Connor, 2020 scholarship recipient, graduated magna cum laude from Yale University last May and is currently working as a management consultant in Chicago!
Young leaders with albinism – check out Aidan’s full update and start YOUR application for the McGowan Leadership Scholarship today!!
Check out the great opportunities to connect this week!
Published: April 4, 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
April 6th at 9:00pm ET // 6:00pm PT
Young adults, we can’t wait to “see” you this Wednesday! Grab your devices and get ready for social time with your PWA pals.
Adults with albinism, get ready to join us for our next session of NOAH Connections that’s just for you! Bring a drink or your favorite snack, and get ready to connect with fellow PWAs this Thursday at 9pm ET // 6pm PT.
In an effort to help attendees figure out conference funding, NOAH is delighted to offer two great resources! The Funding Sources Information Packet provides tips and suggestions for conference funding assistance, and NOAH’s Conference Personal Grant Program is an additional resource to help bridge the funding gap for those who, without assistance, would be unable to attend.
Join Marleena Barber for a special session of Adults with Albinism: Parenting without Pigment on Wednesday, April 13th to discuss tips and tricks for self-care this spring.
The #RAREis Scholarship Fund will award up to 53 scholarships of $5,000 each to college/vocational school students for the Fall 2022 semester. The scholarship application is open through April 22, 2022. Learn more at www.rarescholarship.org
Did you know? James and Andrea Moread co-authored a children’s book, titled “The Brightest Star,” which shares James’ story of growing up as an African-American boy with albinism, and how he was able to find acceptance and success throughout his life. https://www.barnesandnoble.com/w/the-brightest-star-andrea-morehead/1140870070
NOAH Events This Week!
Check out the great opportunities to connect this week!
Published: March 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
Tuesday: Grandparent Connections
March 29th at 8:00pm ET // 5:00pm PT
Calling All Grandparents!
Join Sue Dalton to connect with fellow grandparents of PWAs this Tuesday at 8pm ET // 5pm PT. Grandparents of PWAs of all ages are invited to join our discussion on visual fatigue.
Teens, don’t miss out! Our next session of Teen NOAHConnections is this Thursday at 8pm ET // 5pm PT, and there’s still time to sign up if you’re new to the group.
NOAH Awards Inaugural Grants to Fund Albinism Research!
NOAH is pleased to announce the award of research grants totaling $125,000, presented to three institutions conducting albinism research. This funding is provided through the NOAH Research Program, established in 2021, to support and fund patient-centered research that leads to developing a greater understanding of albinism…
NOAH community member, Mercy, is a 5th grade student with albinism who had the unique experience of learning English as a second language as a young child. Mercy’s mom shared her story in a recent blog post featured on Paths to Literacy:https://www.pathstoliteracy.org/blog/mercys-path-literacy?
Writer, actor, and comedian with albinism, Dennis Hurley, has a big wish for NOAHCon2022…that anyone who wants to go, can go!! (We have this wish too, Dennis!) Check out his video: https://vimeo.com/243556950
NOAH Events This Week!
Check out the great opportunities to connect this week!
Published: March 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
Wednesday: Young Adult Connections
March 23rd at 9:00pm ET // 6:00pm PT
Young adults with albinism, you’re up next! Join us on Wednesday for our next session just for you.
Last Chance – Get Your Disney Tickets Before Prices Increase!
NOAH is thrilled to share that Walt Disney World will provide exclusive ticket discounts to NOAHCon 2022 attendees that are not available at the Disney Ticket Windows.
Purchase your tickets by TOMORROW (3/15) at 3pm ET to lock in extra-discounted pricing! This is the lowest ticket prices will go! www.albinism.org/NOAHCon/#disney-tix
Published: March 14, 2022
We Want to Hear From YOU!
Since our founding in 1982, NOAH has served the albinism community by providing information and support. As our 40th anniversary approaches, we have engaged The BenderStone Group to help the Board of Directors and Leadership team frame critical choices about our strategic direction. An important part of our this process is incorporating feedback and input from those whose lives we touch.
We invite you to participate in a survey to help us understand how YOU perceive, value, and engage with us.
Thank you for taking a few minutes to share your confidential insights and ideas to help NOAH set a direction for the future.
Know a young leader with albinism? Remind them to start their application…there are just under 7 weeks left to apply for the Michael J. McGowan Leadership Scholarship Award!
Are you planning to visit Universal Studios while in Orlando for NOAHCon 2022, but missed the tips & tricks shared on our recent NOAH Connections call?
Check out the great opportunities to connect this week!
Published: March 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
Tuesday: Aging with Albinism
March 15th at 5:00pm ET // 2:00pm PT
Get ready to join June Waugh and friends for our next session of Aging with Albinism, What Happens After Cataract Surgery? TOMORROW at 5pm ET // 2pm PT!
Check out NOAH’s quarterly magazine through the years in our recent video, and get ready for the big reveal of its redesign, just in time for the Spring 2022 issue.
2014 McGowan Leadership Scholarship recipient, Arielle Lewis, is in law school, and is an intern at the Health Law Partnership Legal Services Clinic & is an incoming intern at the Georgia Department of Law’s Medicaid Fraud Control Unit.
Young leaders with albinism – check out Arielle’s full update and start YOUR application for the McGowan Leadership Scholarship today!!
Since our founding in 1982, NOAH has served the albinism community by providing information and support. As our 40th anniversary approaches, we have engaged The BenderStone Group to help the Board of Directors and Leadership team frame critical choices about our strategic direction. An important part of our this process is incorporating feedback and input from those whose lives we touch.
We invite you to participate in a survey to help us understand how YOU perceive, value, and engage with us.
Thank you for taking a few minutes to share your confidential insights and ideas to help NOAH set a direction for the future.
In an attempt to get to know our population better and to meet the needs of our NOAH family, we would like to invite siblings of all ages to share their experiences, ideas and their unique point of view as someone growing up with albinism in their family. The survey is anonymous and can be used for children as well as adult siblings. Feel free to expand as much as you like. The results of this survey will be used to help direct programming as well as used within the NOAH Workshops.
Check out the great opportunities to connect this week!
Published: March 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
TODAY: Parents of Newly Diagnosed Children Workshop
March 7th at 8:30pm ET // 5:30pm PT
Registered attendees – join Sheila Adamo TONIGHT at 8:30pm ET // 5:30pm PT to begin building a community of fellow parents that understand and support each other in adapting to parenting a child with albinism.
Courtney & Alison can’t wait to see you for our final book discussion this Saturday at 3pm ET // 12pm PT! Please finish reading “Roll With It” for this meeting.
Thursday, March 31st: NOAH Connections: Teens NOAH Connections: Dads
EXTRA! EXTRA! Breaking News!
NOAH is thrilled to announce that Walt Disney World will provide exclusive ticket discounts to NOAHCon 2022 attendees that are not available at the Disney Ticket Windows.
Since our founding in 1982, NOAH has served the albinism community by providing information and support. As our 40th anniversary approaches, we have engaged The BenderStone Group to help the Board of Directors and Leadership team frame critical choices about the our strategic direction. An important part of our this process is incorporating feedback and input from those whose lives we touch.
We invite you to participate in a survey to help us understand how YOU perceive, value, and engage with us.
Thank you for taking a few minutes to share your confidential insights and ideas to help NOAH set a direction for the future.
In an attempt to get to know our population better and to meet the needs of our NOAH family, we would like to invite siblings of all ages to share their experiences, ideas and their unique point of view as someone growing up with albinism in their family. The survey is anonymous and can be used for children as well as adult siblings. Feel free to expand as much as you like. The results of this survey will be used to help direct programming as well as used within the NOAH Workshops.
Check out the great opportunities to connect this week!
Published: February 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: PWA Book Club
March 2nd at 9:00pm ET // 6:00pm PT
Book club members – finish up reading “The English Patient” by Michael Ondaatje, and join us to discuss this Wednesday, March 2nd. We can’t wait to “see” you!
Teens with albinism, get ready for game night! Join us for a fun night of Jackbox Games with friends – make sure to have two devices ready (1 for zoom and one for Jackbox!).
Are you planning to visit Universal Studios while in Florida for NOAHCon2022?
Join Nick Smith & Andrew Sartorius this Sunday, March 6th as they share their personal experiences, tips, & tricks for planning a visit to this popular theme park.
In an attempt to get to know our population better and to meet the needs of our NOAH family, we would like to invite siblings of all ages to share their experiences, ideas and their unique point of view as someone growing up with albinism in their family. The survey is anonymous and can be used for children as well as adult siblings. Feel free to expand as much as you like. The results of this survey will be used to help direct programming as well as used within the NOAH Workshops.
Parents & caregivers, join Sheila Adamo for the Parents of Newly Diagnosed Children workshop March 7th at 8:30pm ET, to begin building a community of fellow parents that understand and support each other in adapting to parenting a child with albinism.
We’ve heard from some community members that their Giving Tuesday donation to NOAH was matched at 10% by Facebook!
If you donated to NOAH through Facebook for Giving Tuesday, let us know on our recent post – did you receive a notification that your donation was matched?
Check out the great opportunities to connect this week!
Published: February 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
Tuesday: Parenting without Pigment
February 22nd at 9:00pm ET // 6:00pm PT
PWPs (parents without pigment), we can’t wait to see YOU this Tuesday at 9:00pm ET // 6:00pm PT for our next session of Parenting without Pigment! Join host Andrew S. to discuss travel.
Young adults, we can’t wait to “see” you Wednesday for our next session of NOAH Connections just for you! Grab your computer and get ready for an evening of fun with your NOAH friends.
Courtney & Alison can’t wait to see YOU for our next book discussion this Saturday at 3pm ET // 12pm PT! Finish reading Chapters 3-5 of “Roll with It” by Jamie Sumner, and get ready to discuss.
PWAs who love to read, now is the perfect time to join NOAH’s Book Club! We’ve just begun “The English Patient” by Michael Ondaatje and will meet to discuss March 2nd.
Did you know that the NOAHCon 2022 hotel has 4 onsite dining options?
Citrus 28 is gourmet market and café featuring Starbucks coffee, freshly prepared light meals, gourmet bites and local favorites prepared daily by an expert culinary team.
Congratulations to our friends at the HPS Network, who recently received an additional $150,000 grant from the CZI Rare As One Network! https://bit.ly/3gMKR2Y
NOAH Events This Week!
Check out the great opportunities to connect this week!
Published: February 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
Tuesday: Aging with Albinism
February 15th at 5:00pm ET // 2:00pm PT
Cataract surgery can be a daunting prospect for those considering it, and a liberating experience for those who have already gone through it. Join us TOMORROW at 5pm ET to discuss!
Courtney & Alison can’t wait to see YOU for our first book discussion this Saturday! Make sure to read chapters 1 & 2 of “Roll with It” by Jamie Sumner before we meet this weekend.
Missed the first meeting? No worries – read chapters 1 & 2, and get ready to join us this weekend!
“Diversity is not about how we differ. Diversity is about embracing one another’s uniqueness” – Ola Joseph
This Black History Month, we invite our community members to share their diverse experiences. Black PWAs – what does Black History Month mean to you? Let us know on our recent Facebook post!
Published: February 7, 2022
ONE Week Left to Submit!
Do you have an idea for a NOAHCon 2022 presentation that would benefit the albinism community? There’s still time to submit a proposal!
NOAH welcomes professionals, vendors, and our community members to submit proposals. This is an open call, so help us spread the word!
2022 McGowan Leadership Scholarship Application Now Open!
The Michael J. McGowan Leadership Scholarship Award aims to empower young PWAs by annually recognizing one NOAH member (enrolled in an undergraduate program) who demonstrates outstanding leadership qualities.
Do you know a young leader in the albinism community? Encourage them to apply by May 1st!
Check out the great opportunities to connect this week!
Published: February 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
Tuesday: Career Corner
February 8th at 8:00pm ET // 5:00pm PT
Join us TOMORROW at 8pm ET for a NOAH Connections Career Corner Panel! Panelists Rebecca Smith, Mayia Warren, Hafeez Shaka, & Jocelyn Leworthy will share info about their careers & answer questions about being a PWA in their fields.
Young adults, we can’t wait to “see” you this Wednesday. Don’t miss out on social time with your friends with albinism – mark YA Connections on your calendar now!
Adults with albinism, grab your phone, computer, or tablet and hop on Zoom this Thursday at 9pm ET // 6pm PT for camaraderie & connection with your PWA pals!
Middle grade kids with albinism, get ready to read!
Alison is so excited for our new kids’ book club, and we hope you are too! Check out what book we’ll be reading, and get ready to join our first book club meeting this Saturday!
2022 McGowan Leadership Scholarship Application Now Open!
The Michael J. McGowan Leadership Scholarship Award aims to empower young PWAs by annually recognizing one NOAH member (enrolled in an undergraduate program) who demonstrates outstanding leadership qualities.
Do you know a young leader in the albinism community? Encourage them to apply by May 1st!
Middle grade kids with albinism, get ready to read!
Alison is so excited for our new kids’ book club, and we hope you are too! Check out what book we’ll be reading, and get ready to join our first book club meeting Saturday, February 12th at 3pm ET.
Parents & caregivers, join Sheila Adamo for the Parents of Newly Diagnosed Children workshop March 7th at 8:30pm ET, to begin building a community of fellow parents that understand and support each other in adapting to parenting a child with albinism.
Check out the great opportunities to connect this week!
Published: January 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: PWA Book Club
February 2nd at 9:00pm ET // 6:00pm PT
Book Club members, finish up reading “Night” by Elie Wiesel, and join us to discuss this Wednesday, February 2nd.
Wednesday, February 23rd: NOAH Connections: Young Adults
Parent Liaison Openings
NOAH Parent Liaisons guide parents of newly diagnosed children with albinism through the many resources NOAH has to offer and provide the opportunity to speak directly to a parent of a child with albinism who truly understands. If you are interested in learning more and sharing your experiences as a parent of a child with albinism, please complete the NOAH Parent Liaison Volunteer Interest Form to begin the process.
To be considered for limited Parent Liaison openings in the next training cycle, complete the interest form by February 1st.
Rooms are still available in the NOAHCon 2022 conference attendee room block. Book your room now to secure special, discounted rates just for the NOAH community.
Did you see Kathi’s most recent i2i? Check it out and join in the conversation on our recent Facebook post:
Hey everyone! With the wintery weather, I’m betting we’re all doing a lot of binge watching. Relaxing in front of the tv this weekend led me to inquire about how my PWA pals access their favorite shows. Inspire me with how you like to watch your weekly favorites. Do you use devices or descriptive audio on the tv or watch on a hand-held device?
Registration for Rare Disease Day at the National Institutes of Health (NIH) 2022 is now open! This virtual event on Monday, February 28th will bring together the #RareDiseases community to discuss scientific challenges and opportunities to advance research. Learn more or register: https://go.usa.gov/xeMG7
NOAH Events This Week!
Check out the great opportunities to connect this week!
Published: January 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
Wednesday: Young Adult Connections
January 26th at 9:00pm ET // 6:00pm PT
Young adults, you’re up next! Grab your computer, tablet, or phone and get ready to join us on Zoom.
New to the group? There’s still time to sign up:
Wednesday, February 23rd: NOAH Connections: Young Adults
Martin Luther King Jr. Day
In observance of Martin Luther King Jr. Day, we share this interview with Rev. Jesse Douglas Sr., an African American PWA who was a colleague and personal friend of Rev. King.
Do you have a presentation in mind you’d like to give at NOAHCon? Would you like to provide information, share your skills or hobbies, or provide knowledge to the NOAH community on a specific topic?
Do you have information to share with members of the albinism community? Would you like the opportunity to provide the NOAH community with knowledge and/or resources that are relevant to people with albinism and their loved ones?
NOAH welcomes your proposal for session or poster presentation.
Submitting an article is a great way to share your knowledge and experience with the albinism community, and there’s still time to contribute to the Spring Issue of Albinism InSight!
Deadline extended – submissions due Monday, January 24th.
NOAH Parent Liaisons guide parents of newly diagnosed children with albinism through the many resources NOAH has to offer and provide the opportunity to speak directly to a parent of a child with albinism who truly understands.
If you are interested in learning more and sharing your experiences as a parent of a child with albinism, please complete the NOAH Parent Liaison Volunteer Interest Form to begin the process. To be considered for limited Parent Liaison openings in the next training cycle, complete the interest form by February 1st.
Registration for Rare Disease Day at the National Institutes of Health (NIH) 2022 is now open! This virtual event on Monday, February 28th will bring together the #RareDiseases community to discuss scientific challenges and opportunities to advance research. Learn more or register: https://go.usa.gov/xeMG7
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 18th at 5:00pm ET // 2:00pm PT
You’re invited to Aging with Albinism: Self-Disclosure, tomorrow at 5pm ET // 2pm PT.
How do you decide how much to share about your life with Albinism – the positives and/or the negatives? Join us for a lively discussion!
Check out our recent conference theme announcement & the latest conference information at www.albinism.org/NOAHCon
Published: January 10, 2022
Conference Hotel Room Block is Now Open!
Orlando, here we come!!
The conference attendee room block is now open for NOAHCon2022! Book your room now to secure special, discounted rates just for the NOAH community.
Have you heard about our upcoming NOAH Connections calls? We hope you’ll join us for one of our many upcoming opportunities to connect including NOAH Connections calls for BIPOC, LBGTQ+ and Allies, Parenting without Pigment, and more!
Have you seen the recently-released Netflix movie, Don’t Look Up? If you streamed this feature film over the holidays, you might have noticed a familiar face… Comedian & long-time NOAH community member, Dennis Hurley, was a background actor in the film who appeared on-screen alongside Meryl Streep!
Check out the great opportunities to connect this week!
Published: January 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
TONIGHT: Career Corner
January 10th at 8:00pm ET // 5:00pm PT
Join us TONIGHT at 8pm ET for a NOAH Connections Career Corner Panel! Panelists Kathi Garza, Nick Smith, Claire Sterling, and Marshall Cohen will share information about their careers, and answer participant questions about being a PWA in their respective fields.
NOAH kids, join Casey & Marleena this Tuesday at 8pm ET // 5pm PT to create your very own “Empower Flower” of affirmations and motivations to start the New Year.
Are you looking for some extra motivation as you head into 2022?
Join Casey Greer and Marleena Barber this Tuesday for a guided session in choosing a “Word of the Year.” Your WOTY will represent what you want to be, feel, do, and bring into your life for the coming year.
Adults with Albinism, join special guest host, NOAH Executive Director Karen Bly for our next session of Adult Connections, this Thursday at 9pm ET // 6pm PT.
Join Bianca Rivera MSW, LCSW & Ashley Ullyot MA, LMFT for Your Mind Matters – A Parent & Teen Guide on January 15th. This workshop will empower parents and teens to develop an individualized plan that focuses on the unique stress that teens with albinism face in school.
With NOAHCon2022 just over 6 months away, we are thrilled to announce that the hotel room block, with special pricing for conference attendees, will open this Friday, January 7th. Stay tuned for more details…
NOAH kids, join Casey & Marleena next Tuesday (1/11) at 8pm ET // 5pm PT to create your very own “Empower Flower” of affirmations and motivations to start the New Year.
Are you looking for some extra motivation as you head into 2022?
Join Casey Greer and Marleena Barber on Tuesday, January 11th for a guided session in choosing a “Word of the Year.” Your WOTY will represent what you want to be, feel, do, and bring into your life for the coming year.
NOAH received over $600 from AmazonSmile purchases between September & December. Thank you, shoppers!
It’s so easy to support NOAH through AmazonSmile! Select NOAH as your designated charity today & Amazon will donate 0.5% from every purchase you make through AmazonSmile: https://smile.amazon.com/ch/23-2265173
Published: January 3, 2022
NOAH Events This Week!
Check out the great opportunities to connect this week!
Published: January 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
Thursday: Teen Connections
January 6th at 8:00pm ET // 5:00pm PT
Teens, kick off the new year right and join us for our next session of Teen Connections, this Thursday at 8pm ET // 5pm PT.
New to the group? The first call of the new year is the perfect time to join in for your first time!
Join us for a social gathering open to all LGBTQ+ and allies with albinism this Sunday, January 9th at 8pm ET. Feel free to leave your camera off or dial in via phone if video isn’t your style. We look forward to connecting with you!
Thank YOU for considering an end-of-year gift to NOAH!
“I’ve never felt more relatable and normal than I have with you guys.” – Chelsie (PWA and first time Adults with Albinism Weekend attendee)
With your donation, NOAH can continue to provide a space for the albinism community to meet at in-person events where attendees are able to enjoy a fun and relaxing time together with their NOAH friends and family. Thank you for considering an end-of-year gift to NOAH!
We need YOUR help to start the new year right! If you’d be willing to lead a brief game or activity at New Year with NOAH on Gatherly, send us a message! Bonus points if you have an activity in mind.
Teens & Parents, our next NOAH Workshop is just for YOU!
Join Bianca Rivera MSW, LCSW and Ashley Ullyot MA, LMFT on January 15th for Your Mind Matters – A Parent & Teen Guide. This workshop will empower parents and teens to develop an individualized plan that focuses on the unique stress that teens with albinism face in school.
Check out the great opportunities to connect this week!
Published: December 27, 2021
💡 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
December 29th at 9:00pm ET // 6:00pm PT
Young adults – join us this Thursday at 9pm ET for some much-needed relaxation time with NOAH friends!
Will we see your smiling face on zoom for our last Young Adult Connections call of 2021?
Adult PWAs, you’re invited to our final Adult Connections call of 2021, this Thursday at 9pm ET! We know the holidays can be stressful, and this is the perfect chance to relax and connect with your NOAH friends from the comfort of your couch.
Join NOAH to start the year off right, Sunday, January 2nd at 7pm ET // 4pm PT on Gatherly. Show off your skills in games & activities, or just log on for some social time and relaxation with NOAH Friends!
Join NOAH to start the year off right, Sunday, January 2nd at 7pm ET // 4pm PT on Gatherly. Show off your skills in games & activities, or just log on for some social time and relaxation with NOAH Friends!
Did you know that the NOAHCon2022 hotel is connected by pedestrian skybridge to Disney Springs®, including more than 150 dining, shopping, and entertainment venues?
Join us Monday, January 10th at 8pm ET for a NOAH Connections Career Corner Panel! Panelists Kathi Garza, Nick Smith, Claire Sterling, and Marshall Cohen will share information about their careers, and answer participant questions about being a PWA in their respective fields.
With holiday travel just around the corner, we invite you to share your best low-vision travel tips!
Check out the awesome tips shared or add your own on our recent Facebook Post.
Published: December 20, 2021
In 1977, Dr. Anne Corn wrote the children’s book, Monocular Mac, which shares the story of a young child who receives his first monocular telescope. She has generously shared her book with NOAH to pass on to families with young children: https://albinism.org/books/#monocular-mac
Student with Albinism Seeks School Project Survey ParticipantsHigh school freshman Noah M. is collecting demographic and behavioral data about people with albinism in the USA for a school project. Adults with albinism are invited to complete the survey at:https://bit.ly/3FkuaXe **Please note, NOAH is not affiliated with this school project.
NOAH Events This Week!
Check out the great opportunities to connect this week!
Published: December 20, 2021
💡 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
December 23rd at 8:00pm ET // 5:00pm PT
Teens with albinism – we can’t wait to see YOU this Thursday! Get ready to join us on Zoom for our final Teen Connections call of 2021!
NOAH Connections is taking a Holiday Break from December 24th – 29th. We look forward to seeing you at future sessions at the end of December, and in the new year!
Joining a NOAH Connections Advisory Task Force is the perfect way to let your voice be heard! We are currently looking for members for the following task force groups:
Thank YOU for donating to NOAH’s Amazon Wish List!
Check out all of these awesome donations! Sending a special shoutout to our generous community members who donated items for New Parent Toolkits through our Amazon Wish List!
Check out the great opportunities to connect this week!
Published: December 13 2021
💡 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 14th at 5:00pm ET // 2:00pm PT
We can’t wait to see YOU for our next session of Aging with Albinism! Join June Waugh and friends on December 14th to discuss ways you’ve enhanced your mental health over the years.
Wednesday, January 12th: NOAH Connections: Young Adults
THANK YOU!
We are thrilled to share that we have earned the $4,000 NOAH Board of Directors match and EXCEEDED our GivingTuesday goal, thanks to the generosity of our community members! Thank you so much to all who have donated and shared our fundraiser.
Published: December 6, 2021
Career Corner – Rebecca Smith
Rebecca Smith is an educator who works with kids preschool through grade 12 with moderate/intensive disabilities & visual impairments!
This week, we featured Parent Liaisons, Anne Contant & Regan Gentile as part of our Parent Liaison spotlight. Get to know Anne, Regan, and other Parent Liaisons at www.albinism.org/new-parent-program/PL
Published: December 6, 2021
Did You Know?
Did you know that the #NOAHCon2022 hotel has a float lagoon (lazy river) with beach-style entry & complimentary floats?
Check out the great opportunities to connect this week!
Published: December 6 2021
💡 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
December 9th at 8:00pm ET // 5:00pm PT
Teens, we look forward to seeing you again this week at our regularly scheduled time. Join us Thursday at 8:00pm ET // 5:00pm PT. We can’t wait to see you!
PWAs who identify as LGBTQ+ and allies, mark your calendars for our next session of NOAH Connections, Thursday, December 9th at 9pm ET // 6pm PT. New to the group? Sign up now for the invite to this session, and future ones too!
Thanks to the generosity of NOAH’s Board of Directors, NOAH can earn a guaranteed $4,000 in matching funds this Giving Tuesday with YOUR support. Additionally, beginning TOMORROW at 8:00am ET, gifts to NOAH made via Facebook will be eligible for the $8 million Facebook match until funds run out. Your support of NOAH goes even further this Giving Tuesday – no gift is too small!
This holiday season, NOAH is thankful for our Board of Directors, Parent Liaisons, community members, fundraisers, and volunteers! We are so grateful that YOU are part of our NOAH family!
Published: November 29, 2021
Career Corner – Mayia Warren!
Mayia Warren is an advocate & content creator with albinism!
This past Friday, we shared a special Black Friday edition of Jessica’s Friday Favorites…but we know the deals have been continuing all weekend. Check out the awesome products shared, and add your own suggestions to our recent Jessica’s Friday Favorites Post!
Let’s help make this gift-giving season easier for everyone.
Check out the great opportunities to connect this week!
Published: November 29 2021
💡 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
December 1st at 9:00pm ET // 6:00pm PT
Young adults – you’re up next! Grab your computer, tablet, or phone, and get ready to join us for our next session of NOAH Connections. This is the perfect chance to relax and unwind with friends during the busy holiday season.
Teens, we know you were busy with Thanksgiving last week, so we rescheduled our Teen Connections call to this Thursday! Log on at 8:00pm ET // 5:00pm PT to let us know how your Thanksgiving was, fill us in on your upcoming holiday plans, and more.
Thursday: Grandparenting a Child with Albinism Workshop
December 2nd at 8:30pm ET // 5:30pm PT
NOAH Grandparents – join Sheila Adamo this Thursday to explore some typical emotions and fears many grandparents experience and discuss strategies to help the family adjust and thrive.
It’s time for Inquire to Inspire. Here comes Kathi with an i2i!
Thanksgiving is this week and my most favorite holiday. I’ve always loved being in the kitchen cooking with my mom, at least until we start getting bossy with one another.
Let’s talk kitchen hacks! What tricks do you use to help you get the job done, or what helped you learn how to handle the swords and fire in the kitchen?
Join the conversation on our recent Facebook Post!
Published: November 22, 2021
Adoption Stories: Morrow Family
FROM CONGO TO CHINA: AN ADOPTEE & ADOPTIVE DAD SHARES HIS STORY
“My story begins in a small village in Eastern Congo. My mother passed away while giving birth to me. And per the customs I was born into, my tribe blamed me for her death. Tradition determined I should be buried with my mother…”
Our friends at the Global Albinism Alliance – Pilot recently released an executive summary on the results of their worldwide survey of organizations serving the albinism community. Check it out! https://www.facebook.com/GlobalAlbinism/posts/417235879836918
NOAH Events This Week!
Check out the great opportunities to connect this week!
Published: November 22 2021
💡 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: Canadian Parents Education Session
November 22nd at 8:15pm ET // 5:15pm PT
Calling all Canadian parents! Join Amanda Grant, TVI, for a session about the education system TONIGHT at 8:15pm ET // 5:15pm PT. This call will be focused on Ontario, but parents from all provinces are welcome to attend.
Check out the great opportunities to connect this week!
Published: November 15 2021
💡 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: Stares, Smirks, and Shoutouts Workshop
November 16th at 8:00pm ET // 5:00pm PT
Registered attendees, we look forward to seeing you at our upcoming NOAH Workshop, Stares, Smirks, & Shout-outs, facilitated by Kelsey Thompson! We’ll discuss dealing with negative experiences in public & more.
Registration deadline extended!
Want to join us but haven’t signed up yet? Register by midnight ET!
No need to look fabulous or cook a gourmet meal…come as you are to NOAH Friendsgiving on Gatherly this Sunday. Enjoy social time, or participate in your choice of games and activities, including a recipe swap with NOAH friends. Sweatpants & microwave meals are welcome.
We received so many awesome subimssions for our first-ever, virtual Halloween costume contest, and we are so excited to share them with you! Check out all of our contestants in our Halloween Costume Contest Album on Facebook, and “like” your favorite costume to vote.
Vote by November 12th to help us pick our contest winners!
Published: November 8, 2021
Looking for a way to help NOAH?
We have the perfect opportunity for YOU! Let your voice be heard – represent the interests of the community in planning for future NOAH Connections sessions through volunteering on a NOAH Connections Advisory Task Force.
Excitement is building as our Research Program Committee and Scientific Advisory Board have received all of the applications for NOAH’s FIRST RESEARCH GRANTS! The team is currently reviewing applications to determine grant awardees.
STAY TUNED – Awardees will be announced in JANUARY 2022!!
Thank goodness we had #AVisionBeyond 2020…and now NOAHCon 2022 is fast-approaching and we can’t wait to bring together the albinism community, in-person!
What do YOU think our next conference theme should be? Share your ideas on our recent Facebook post or submit via email by Friday, November 12th.
Published: November 8, 2021
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.
Submit your story & photos via email today!
Use the Share with NOAH form or email us at info@albinism.org
Sofia Qvarfort, a theoretical physicist with albinism who started a website that offers tips and resources for visually impaired people in academia, was recently featured in the Nature Journal. Check it out! https://www.nature.com/articles/d41586-021-02908-6
NOAH Events This Week!
Check out the great opportunities to connect this week!
Published: November 8 2021
💡 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: NOAH Connections – Dads!
November 8th at 8:00pm ET // 5:00pm PT
Calling All Super Dads!
Join host Sam McClung TONIGHT at 8pm ET for a call just for dads! You won’t want to miss this chance to share experiences & join together in the goal of being the best dad we can be for our kids with albinism.
Adult PWAs, don’t miss this informative session about Hermansky-Pudlak Syndrome (HPS) presented by Donna Appell. Knowledge of HPS eliminates the risk of not knowing about something that may affect your well-being.
PWAs who identify as LGBTQ+ and allies – join us this Thursday for our next NOAH Connections session just for you! Feel free to join with voice only if preferred.
Submit YOUR costume for NOAH’s Halloween Costume Contest!
Whether it’s funny, scary, cute, or spooky, we want to see YOUR Halloween costume! PWAs – share a photo of your costume with NOAH by Friday, November 5th to be entered into our first ever, virtual costume contest. Costume photos can be sent via email, social media DM, or posted in the comments on our recent Facebook Post.
Published: November 1, 2021
Looking for a way to help? Let YOUR voice be heard!
NOAH seeks volunteers to represent the interests of the community in planning for future NOAH Connections sessions.
Thank goodness we had #AVisionBeyond 2020…and now NOAHCon 2022 is fast-approaching and we can’t wait to bring together the albinism community, in-person!
What do YOU think our next conference theme should be? Share your ideas on our recent Facebook post or submit via email by Friday, November 12th.
Published: November 1, 2021
Announcing: Podcast Panel!
Join us on Sunday, November 14that 4pm ET // 1pm PT as Jennie Bovart, Dale Hamilton, Casey Greer, & Cassandra Mendez share their experiences as PWAs who host podcasts!
Congratulations to NOAH community member, Casey Witte for winning the 2021 Jessup Cup! If you are a law student or work in the legal profession, you might recognize Casey from one of our PWAs in the Legal Profession NOAH Connections sessions! https://www.facebook.com/42807611846/posts/10158243232506847/
Check out the great opportunities to connect this week!
Published: November 1 2021
💡 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 3rd at 9:00pm ET // 6:00pm PT
Extra, extra, read all about it! The next Young Adult Connections call is sure to be newsworthy. Join us this Wednesday for the full scoop.
Parents, grandparents, & caregivers – don’t miss out on our upcoming NOAH Workshop: Dealing with Comments & Questions this Thursday, November 4th. We hope you’ll join Sheila Adamo for this wonderful opportunity to connect and learn!
Whether it’s funny, scary, cute, or spooky, we want to see YOUR Halloween costume! PWAs – share a photo of your costume with NOAH by Friday, November 5th to be entered into our first ever, virtual costume contest. Costume photos can be sent via email, social media DM, or posted in the comments on our recent Facebook Post.
Published: October 25, 2021
NOAH Connections Holiday Activities!
The holiday season is just around the corner, and we can’t wait to celebrate with the albinism community!
What NOAH Connections holiday activities would YOU like to attend in the coming months? Let us know by commenting on our recent Facebook post, or sending us an email!
Published: October 25, 2021
The Dads’ Call is Back!
Calling all NOAH Dads! Sam McClung invites YOU to join us for a call just for dads, to share in our unique experiences & join together in the goal of being the best dad we can be for our children with albinism.
Check out the great opportunities to connect this week!
Published: October 25, 2021
💡 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: PWAs in the Legal Profession
October 26th at 8:30pm ET // 5:30pm PT
Lawyers, paralegals, law students, and judges – we can’t wait to see you Tuesday at 8:30pm ET // 5:30pm PT!
New to PWAs in the Legal Profession? Join today for the link to this call, and we’ll invite you to future sessions, too! www.albinism.org/NOAH-Connections/#legal
Published: October 25, 2021
Thursday: Teen Connections
October 28th at 8:00pm ET // 5:00pm PT
Teens, it’s your turn to share your story. Come discuss your journey with Albinism from your childhood until now on our next Teen Connections call, Thursday, October 28th at 8pm ET // 5pm PT.
This past Friday, we celebrated NOAH’s 39th birthday with a fundraiser, BINGO Birthday Bash, and and After Hours Game Night!
Thank you to everyone who joined us in celebrating! Congratulations to all of our BINGO and Game Night winners!
PS – It’s not too late to give NOAH a belated “birthday gift” and help us reach our goal of 39 gifts of any size in honor of 39 years of NOAH!
Published: October 18, 2021
Oh! The Places My White Cane Takes Me!
In addition to being NOAH’s 39th Birthday, Friday was also White Cane Day! In honor of this occasion, we invited the white cane users in our community to share a photo of a place their white can has taken them. Check out the fun photos shared and add your own on our recent Facebook post!
Published: October 18, 2021
National Disability Employment Awareness Month & NOAH’s Career Corner
October is National Disability Employment Awareness Month (NDEAM)!
Held each October, NDEAM aims to educate about disability employment issues and celebrate the many and varied contributions of America’s workers with disabilities. Learn more at: www.dol.gov/NDEAM
NOAH is thrilled to launch our Career Corner during NDEAM to highlight the jobs and careers of PWAs in our community this October and beyond!
Adult PWAs, don’t miss this informative session about Hermansky-Pudlak Syndrome (HPS) presented by Donna Appell. Knowledge of HPS eliminates the risk of not knowing about something that may affect your well-being.
Check out the great opportunities to connect this week!
Published: October 18, 2021
💡 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: Adapting to the Diagnosis of Albinism as a Family
October 18th at 8:30pm ET // 5:30pm PT
Pre-registered parents & caregivers – Sheila Adamo looks forward to seeing you for Adapting to the Diagnosis of Albinism as a Family at 8:30pm ET. We’ll learn together and connect with our supportive community.
Registration for this session closed Saturday, but we invite you to check out the NOAH Workshops page for information about other upcoming workshops:
Join June Waugh & friends this Tuesday at 5:00pm ET / 2:00pm PT to discuss some of the many issues our families had to face: explaining our appearance, learning about vision & sun sensitivity, and more.
Adult PWAs, come join us this Thursday at 9pm ET/6pm PT as we discuss our albinism journey from diagnosis until now. What have you learned throughout this journey?
NOAH kids – how do YOU feel about having albinism? Join Jocelyn for NOAH’s All the Feels Workshop on Oct. 24th to talk about our feelings with a fun story, science experiment, and arts activity!
Join us on Sunday, October 24th at 4:30pm ET for a star-studded panel of Paralympian PWAs hosted by Pam McGonigle & Donté Mickens. This exciting opportunity is open to all NOAH community members, so spread the word & sign up now!
Parents, grandparents, & caregivers, have you registered for NOAH’s Adapting to the Diagnosis of Albinism as a Family Workshop? You won’t want to miss this opportunity to learn and connect with our supportive community, facilitated by Sheila Adamo.
Check out the great opportunities to connect this week!
Published: October 11, 2021
💡 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 14th at 8:00pm ET // 5:00pm PT
Teens, you’re up next! Join us this Thursday at 8pm ET to make new friends and re-connect with old ones.
YOU belong here! Join us for a social gathering open to all LGBTQ+ and allies with albinism this Thursday, October 14th at 9pm ET. Feel free to leave your camera off or dial in via phone if video isn’t your style. We look forward to connecting with you!
NOAH Adults, you’re invited to NOAH’s 39th Birthday after-party! Join us following the BINGO Birthday Bash for a NOAH After Hours 18+ Game Night this Friday, October 15th at 9pm ET / 6pm PT.
Young Adult NOAH Connections is moving to a new day (and possibly time). Young Adults with albinism, please take the Doodle poll below to help us determine our new meeting day & time.
Adapting to the Diagnosis of Albinism as a Family Workshop
Parents, grandparents, & caregivers, join Sheila Adamo for NOAH’s Adapting to the Diagnosis of Albinism as a Family Workshop to learn and connect with our supportive community.
NOAH’s New Parent Program is in need of BabyBanz Sunglasses for New Parent Toolkits and we need YOUR help. If you’d like to purchase a pair of sunglasses to donate to this program, check out our Amazon Charity List:
Living with albinism isn’t always easy. To be happy, self-actualized adults, people with albinism and their families need to find ways to cope with and learn from the not-so-good experiences.
Check out Kelsey Thompson’s practical tips for developing resiliency in her NOAHCon 2020 session, Resilience & Self-Care: https://vimeo.com/445334134
For access to more educational video content, visit NOAH’s full Video Library at: www.albinism.org/vimeo
Published: October 4, 2021
NOAH Events This Week!
Check out the great opportunities to connect this week!
Published: October 4, 2021
💡 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: Preschool Connections
October 6th at 12:00pm ET // 9:00am PT
Preschoolers, get ready for some fall fun with Miss Kathi!
Join us this Wednesday, October 6th at 12pm ET for fun fall fingerplays! We’ll also talk about beautiful fall changes, and share treasures from nature or drawings of our favorite fall things!
Book Club members, finish up reading “Killers of the Flower Moon: The Osage Murders and the Birth of the FBI” by David Grann and get ready to discuss this Wednesday at 9pm ET/6pm PT.
Whether you’ve been back to school for a month or just a few days, we want to see your 2021 back to school pics!
Check out our recent Facebook post to share your photos.
Published: September 27, 2021
NOAH’s Back to School Library
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 included in our Back to School Library!
Check out the great opportunities to connect this week!
Published: September 27, 2021
💡 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: Karen’s First Coffee Chat!
September 29th at 8:00pm ET // 5:00pm PT
You’re Invited to Karen’s First Coffee Chat!
Join us this Wednesday, September 29th at 8pm ET for Karen’s first coffee chat! Coffee chats are open to all NOAH community members, so log in to share your voice, or simply join us for some social time.
Young adults with albinism, you’re invited to our next session of Young Adult Connections this Thursday at 9:15pm ET//6:15pm PT. This is a great chance to relax, unwind, connect, and share experiences with fellow PWAs.
With the help of 40 supporters from 13 different states, Sonja & Donté’s Pop-Up Popcorn Sale raised over $900 for NOAH in just 4 days!
Thank you, Sonja, Donté, and everyone who purchased gourmet popcorn to support NOAH!
Published: September 20, 2021
Happy National Hispanic Heritage Month!
Hispanic Heritage Month celebrates the histories, cultures and contributions of Americans descended from Spain, Mexico, the Caribbean, and Central and South America. The celebration begins each year on September 15th, which is the anniversary of independence for Latin American countries Costa Rica, El Salvador, Guatemala, Honduras and Nicaragua.
Hispanic PWAs and families – how are you celebrating or observing National Hispanic Heritage Month? Let us know on our recent Facebook Post!
Children & families, join Jocelyn Leworthy this Sunday to decorate your very own worry creature! Worries are a normal part of life, everyone experiences them – together we’ll share ways to cope with our worries as people with albinism.
The next issue of Albinism InSight is hitting inboxes and mailboxes soon, and you won’t want to miss it! There’s something for everyone in each and every issue.
Children & families, join Jocelyn Leworthy Sunday, September 26th to decorate your very own worry creature! Worries are a normal part of life, everyone experiences them – together we’ll share ways to cope with our worries as people with albinism.
PWAs who love to read, now is the perfect time to join NOAH’s Book Club! We’ve just begun “Killers of the Flower Moon: The Osage Murders and the Birth of the FBI” by David Grann and will meet to discuss October 6th.
September is National Guide Dog Month, so join us in sending an extra-special shoutout to the canines in our community who assist their owners with albinism in navigating all of life’s adventures.
Check out our recent Facebook post and share a photo of an awesome guide dog in your life!
Check out the great opportunities to connect this week!
Published: September 13, 2021
TODAY: Panel of Grandparents of Children with Albinism
September 13th at 8:30pm ET // 5:30pm PT
Join our hosts Rick, Joann, and Laura for an interactive question and answer session for grandparents to share their triumphs and struggles grand-parenting a child with albinism.
Sign up for Grandparent Connections now to receive the link for tonight’s session, and we’ll automatically subscribe you to email reminders for future opportunities to connect!
Young adults, you’re up next…Join us this Thursday, September 16th at 9:15pm ET // 6:15pm PT to chat about our favorite fall activities, recipes, and more!
NOAH kids of all ages, there’s still time to sign up for an epic dance party with Casey Greer and Mackenzie Strong, September 19th at 3:30pm ET // 12:30pm PT!
Have a song request? Send it to cgreer@albinism.org
Wishing a Happy Labor Day, and Happy Rosh Hashanah to all in our community who celebrate!
You’re Invited to a Safe & Enjoyable Adult Weekend!
We are so excited to see you for Adult Weekend fun this fall! As you prepare to join us in Memphis, we invite you take a moment to review NOAH’s plans to provide a safe, enjoyable Adult Weekend experience: www.albinism.org/adult-weekend/#covid
Don’t miss out on this unique opportunity for connection and camaraderie with fellow PWAs – register by September 10th! www.albinism.org/adult-weekend
Published: September 6, 2021
NOAH Workshop: Adapting to the Diagnosis of Albinism as a Family
Parents, grandparents, & caregivers, join Sheila Adamo on Monday, October 18th at 8:30pm ET to discuss adapting to a diagnosis of albinism & learn strategies to support each other.
Check out this inspiring personal essay written by model & activist with albinism, Thando Hopa! Her essay, titled “I Am a Black African Woman With Albinism & There’s Nothing “Deficient” About Me” was recently shared by Allure: https://www.allure.com/story/thando-hopa-personal-essay-albinism
NOAH Events This Week!
Check out the great opportunities to connect this week!
Published: September 6, 2021
Wednesday: PWAs in the Legal Profession
September 8th at 8:00pm ET // 5:00pm PT
Looking to connect with fellow PWAs who are lawyers, judges, paralegals, or law students? Join Arielle Lewis this Wednesday at 8pm ET for social time with PWAs in your field!
Thursday, September 23rd: NOAH Connections: Adults
Thursday, September 30th: NOAH Connections: Teens NOAH Connections: Young Adults
NOAH Connections strives to provide meaningful opportunities to connect for the diverse members of our community, and we want to make sure YOU feel welcomed and supported.
Are you part of a group you would like to see represented in future programming? Let us know through our submission form: https://app.donorview.com/m4yNW
Published: August 30, 2021
Will We See YOU on Beale St?!
Our adult weekend crew is growing, and we can wait to recreate our “group photo” in Memphis!
Don’t miss out on this unique opportunity for connection and camaraderie with fellow PWAs – register by September 10th! 🗓️ www.albinism.org/adult-weekend
Published: August 30, 2021
NOAH Kids Dance Party!
NOAH kids of all ages, get ready to dance the day away with Casey Greer and Mackenzie Strong on Sunday, September 19th at 3:30pm ET // 12:30pm PT!
Have a song request? Send it to cgreer@albinism.org
The 2020 Paralympic Games kicked off on August 25th, and we’ve been spotlighting awesome athletes with albinism representing Team USA & Team Canada over the past week.
Check out their spotlights on NOAH’s Facebook, Instagram, and Twitter, and don’t forget to tune in to watch the remaining Paralympic events!
Published: August 30, 2021
NOAH Events This Week!
Check out the great opportunities to connect this week!
Published: August 30, 2021
Wednesday: Preschool Connections
September 1st at 12:00pm ET // 9:00am PT
Preschoolers, grab your grown ups and get ready to see Miss Kathi for our next session of Preschool Connections! We’ll read “The Day The Crayons Quit” and do a coloring activity to examine the letters in our names.
Young adults, you’re up next! Kick off September on the right foot & join us for our first Young Adult Connections of the month this Thursday at 9:15pm ET.
Thursday, September 23rd: NOAH Connections: Adults
Music Fans, This One’s for YOU!
Don’t miss the Rock ‘n’ Soul museum at this year’s Adult Weekend.
“It tells the story of musical pioneers who, for the love of music, overcame racial and socio-economic barriers to create the music that shook the entire world.”
Learn more about our plans for this unique gathering of PWAs in Memphis, TN and register today! www.albinism.org/adult-weekend
Published: August 23, 2021
Bioptic Driving in Ontario
PWAs from Ontario, join Dr. Tammy Labreche for a Q&A about Bioptic Driving, Sunday, September 12th at 4pm ET!
Any questions you’d like to have answered during the session? Send them to Shelly at safas23@gmail.com
This past Friday, we heard from the NOAH community for another Jessica’s Friday Favorites! This time, we shared favorite tech products and apps.
Check out community member suggestions and add your own on our recent Facebook post.
Published: August 23, 2021
NOAH Events This Week!
Check out the great opportunities to connect this week!
Published: August 23, 2021
TODAY: Parents of Newly Diagnosed Children Workshop
August 23rd at 8:30pm ET // 6:30pm PT
Pre-registered parents & caregivers, Sheila Adamo looks forwards to seeing you for Parents of Newly Diagnosed Children 8/23 at 8:30pm ET. Together, we will begin building a community of fellow parents that understand and support each other in adapting to parenting a child with albinism.
Registration for this session closed Saturday, but we invite you to check out the NOAH Workshops page for information about other upcoming workshops:
Adults with albinism, join Casey Greer this Thursday for social time with fellow PWAs.
New to Adult Connections? Now’s the perfect time to join for the first time! Sign up today for the invite to this session and future chances to connect:
We are thrilled to announce that Charlotte-based photographer, Gavin Boulware will be leading our next session of BIPOC Connections! Join Gavin for social time with fellow BIPOC PWAs Saturday, August 28th at 3pm ET.
New to BIPOC Connections? Sign up today for info on this call, and you’ll be invited to future opportunities to connect too! www.albinism.org/NOAH-Connections/#bipoc
Published: August 23, 2021
Save the Date!
Mark your calendars for these upcoming opportunities to connect:
Thursday, September 23rd: NOAH Connections: Adults
NOAH Workshop: Parents of Newly Diagnosed Children
Parents & caregivers, join Sheila Adamo for Parents of Newly Diagnosed Children, August 23rd at 8:30pm ET, to begin building a community of fellow parents that understand and support each other in adapting to parenting a child with albinism.
Contribute to NOAH’s Back to School Library!
Last week, we launched NOAH’s new Back to School Library, a place for parents to share ideas for teachers and classmates about what it means to have albinism. We’ve received a few wonderful submissions, but we are still in search of more ideas to help grow our library!
Submit your sample letters, presentations, ideas, etc. (including your child’s age/grade, and photos/videos if applicable!) to bts@albinism.org to help grow this wonderful resource for parents!
TEE Talk: Parenting with Self-Awareness & Authenticity
Check out Tanika Harris’ recent “TEE Talk” for parents/caregivers where she shares her story of raising her son with albinism with self-awareness & authenticity.
6-year-old community member, Hunter, learned that NOAH provides information for PWAs interested in driving – something that he wants to do when he gets older. So, he created a business plan for a lemonade stand to support NOAH, and was able to donate over $100 after selling lemonade at his local boat ramp!
Thank you, Hunter!
Published: August 16, 2021
Memories from NOAH Family Summer Camp!
Camp may be over, but we are continuing to receive fun photos and videos from our campers documenting many amazing memories shared at Lions Camp Pride.
Make sure you’re following NOAH’s Facebook, Instagram, and Twitter so you don’t miss any fun memories from camp!
Published: August 16, 2021
NOAH Events This Week!
Check out the great opportunities to connect this week!
Published: August 16, 2021
Thursday: Teen Connections
August 19th at 8:00pm ET // 5:00pm PT
Teens with albinism, you’re up next! Join us this Thursday for social time with fellow PWAs.
New to Teen Connections? Now’s the perfect time to join for the first time! Sign up today for the invite to this session and future chances to connect:
Young adults with albinism, grab your devices and log on to zoom for our next session of NOAH Connections just for you! Thursday night is the perfect time to socialize and relax with fellow PWAs.
Monday, September 13th: NOAH Connections: Grandparents
Thursday, September 16th: NOAH Connections: Teens NOAH Connections: Young Adults
Announcing: NOAH’s Back to School Library!
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 new Back to School Library!
Already registered? Send your full-body photo to marketing@albinism.org and we’ll add you to our “group photo” on Beale St!
Published: August 9, 2021
The NOAH Program Umbrella
NOAH is delighted to announce the reorganization of virtual programming for parents, grandparents, and caregivers to better serve the needs of our community, with added opportunities under the NOAH program umbrella.
In addition to sessions just for parents or caregivers and just for grandparents, NOAH now offers combined educational programming and NOAH Workshops.
Stay tuned for more updates on the continued expansion of NOAH programming!
NOAH Workshops are custom-designed sessions, facilitated by a licensed professional, which address social emotional and educational needs. Alongside NOAH Connections, these sessions will provide a deeper connection to others and build our community.
Our first NOAH Workshop will be “Parents of Newly Diagnosed Children,” a session for parents & caregivers facilitated by Sheila Adamo on Monday, August 23rd.
Guided by our awesome camp staff, NOAH campers had a blast at Lions Camp Pride this past week. Join us in thanking our camp director and staff for making the NOAH Camp experience so wonderful for everyone in attendance!
Stay tuned as we continue to share fun memories from camp on the NOAH Facebook, Instagram, and Twitter!
Published: August 9, 2021
NOAH Connects Grandparents
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.
Check out the great opportunities to connect this week!
Published: August 9, 2021
TONIGHT: Parenting with Self-Awareness and Authenticity
August 9th at 9:00pm ET // 6:00pm PT
Parents & caregivers, you’re invited to Parenting with Self-Awareness and Authenticity with Tanika Harris TONIGHT at 9pm ET // 6pm PT!
Together we’ll share our unique experiences and perspectives about the journey of raising a child with albinism while acknowledging the levels of privilege and discussing ways to assist others in our community.
Sign up to join Parent Connections today for the link to join this call, and we’ll send you email reminders for future chances to connect!
Lawyers, judges, paralegals, and law students – join us Wednesday at 9pm ET/6pm PT for NOAH Connections: PWAs in the Legal Profession hosted by Arielle Lewis!
Adult PWAs, grab your computer, laptop, phone, or tablet, and get ready to join us this Thursday for our next session of NOAH Connections! “See” you soon!
Americans with Disabilities Act – 31st Anniversary!
July 26th marked the 31st Anniversary of the Americans with Disabilities Act, a civil rights law that was enacted to protect people with disabilities from discrimination.
In honor of this recent anniversary, we share NOAH’s information bulletin that discusses the social aspect of albinism including its relation to disability.
American Foundation for the Blind (AFB) Seeking Adults with Low Vision to Participate in Survey. Now through August 8th, AFB seeks participants for The Journey Forward, a continuation of their Flatten Inaccessibility study. For more info visit: https://www.afb.org/research-and-initiatives/flatten-inaccessibility-survey
Albinism in the News! Check out this recent video feature by Yahoo! News on Jennifer Renée and the line of false lashes for people with albinism that she launched in January 2020 through her beauty company, “Ivoree Beauty x J.Renée”: https://news.yahoo.com/albino-makeup-artist-creates-inclusive-202450055.html
NOAH Events This Week!
Check out the great opportunities to connect this week!
Published: August 2, 2021
TONIGHT: Education & Albinism
August 2nd at 8:30pm ET // 5:30pm PT
Parents, grandparents, and caregivers, join Kathi Garza and Jill Gorman TONIGHT to learn about typical services that children with albinism may need in school and ways you can assist in the process.
Book club members, have you finished reading Effortless? You have just a few days to finish up our current book selection before we meet to discuss this Wednesday at 9pm ET // 6pm PT!
Young adults, you’re up next! Put it in your planner, mark the calendar, or set a reminder so you don’t miss the chance for social time with your friends with albinism!
Join us this Sunday at 3pm ET // 12pm PT for a reading of the soon-to-be-released children’s book “Golden Like Me” followed by a Q&A with author Brandi M. Green. All are welcome – register today to attend!
We’ve received some great feedback about educational sessions at Adult Weekend 2021, but we want to make sure YOU didn’t miss the chance to share your thoughts!
Colleen Young competed in her first Paralympic Games in 2012 at just 14 yrs old, and will be swimming for Team USA at her 3rd Paralympic Games this August. Check out this Blind Spot interview with Colleen from United States Association of Blind Athletes: https://www.facebook.com/115311768519523/videos/204556211502165
Check out the great opportunities to connect this week!
Published: July 26, 2021
Thursday: Adult Connections
July 29th at 9:00pm ET // 6:00pm PT
Adults with albinism, if you haven’t attended a NOAH Connections call before, there’s still time to join!! Don’t miss out on your next chance to connect, this Thursday, July 29th at 9pm ET // 6pm PT.