NOAH News Today

Social Distancing with the Albinism Community

Connect with NOAH Friends!

Have you heard about NOAH’s new video call series, Social Distancing with Friends? Now is the perfect time to bring the albinism community together virtually, and we hope you’ll join us! We recommend logging on via computer or smartphone, so we can all see each others’ smiling faces.

Upcoming sessions include: Surviving Social Distancing with Kids (Monday 3/30), Family Social Hour – #ItsNOAHTime (Tuesday 3/31), Grandparents Social Distancing (Thursday 4/2), Young Adults’ Night In! (Thursday 4/2), and PWA Happy Hour! (Wednesday 4/1 & Friday 4/3).

Don’t forget to invite your friends!

For more information on all upcoming calls, visit: www.albinism.org/social-distancing-with-friends

Posted: March 30th, 2020

Share Your Talents

During this time of social isolation, we invite you to stay connected and share your amazing talents with one another! Share your video clip….choir performance, gymnastic routine, dance recital routine, or band solo – you get the idea! Prepare to be inspired and entertained! Here’s the performance by the first ever all PWA Choir at #NOAHCon2018 to kick things off!

PWA Choir at #NOAHCon2018

Posted: March 30th, 2020

Calling All Parents & Grandparents!

If you haven’t joined yet, now is the perfect time to get connected with a community of people who “just get it.” Sign up to be a part of either of these uplifting groups and join us for one of many upcoming calls. Parents, you won’t want to miss upcoming discussions on Adapting to Albinism (April 3rd) and Education and Albinism (April 15th). Grandparents, our call about Albinism and the Eye is just around the corner (May 19th)!

For more information on upcoming calls and how to join, visit: www.albinism.org/parent-connections or www.albinism.org/grandparentconnections

Posted: March 30th, 2020

Youth Opportunities

Michael J. McGowan Leadership Scholarship & NOAH’s Junior Advisory Council

Young adults with albinism: Are you looking for something productive to do during social distancing? Now is a great time to work on your McGowan Leadership Scholarship and Junior Advisory Council applications ahead of the May 1st deadline! Learn more at albinism.org/leadership and albinism.org/junior-advisory-council.

Posted: March 30th, 2020

#StayHome Resources

Special Education Services Guidelines

“There is no defined or correct method to adequately and equitably meet the needs of all students in an unprecedented event such as the current COVID 19 pandemic response. LEAs need to be flexible and consider employing a variety of delivery options as they make reasonable efforts to provide services to students with disabilities.” – Texas Education Agency (COVID-19 & Special Education in Texas)

Parents, as we navigate this time of school closure, it’s helpful to be on the lookout for guidance from your state, and from the United States Department of Education about how and in what circumstances special education services may be provided.

Posted: March 30th, 2020

Freedom Scientific Offers Free Software!

Did you know that Freedom Scientific is currently offering free home-use software to those affected by COVID-19?
Learn more: Freedom Scientific Software Offer

Posted: March 30th, 2020

#NOAHCon2020 Early Deadline Extended

The health and safety of conference attendees is NOAH’s highest priority. To allow additional time to monitor and stay abreast of recommendations and best practices concerning the coronavirus (COVID-19), NOAH has extended the early registration rates through May 15th.

Posted: March 30th, 2020

Coronavirus (COVID-19) & NOAH Events

NOAHCon2020

As the coronavirus (COVID-19) situation continues to evolve, NOAH remains vigilant in staying abreast of recommendations and best practices for community gatherings. At this time, NOAH hopes that ongoing measures will be effective and plans to proceed with the conference as scheduled because it is an invaluable program for the albinism community. As always, the health and safety of conference attendees is NOAH’s highest priority. Should it become unsafe or impractical to hold the conference, NOAH will alert all registrants promptly.

Posted: March 16th, 2020

Spring for NOAH Events

As the excitement of our Spring for NOAH fundraising season has recently been dampened by concerns regarding the novel coronavirus (COVID-19), please know that NOAH truly appreciates the dedication and support shown each year by event hosts, attendees, and donors alike. While this ever-evolving situation is beginning to cause postponements and changes in events this fundraising season, we are heartened to hear of plans to reschedule to a later date, as well as creative and lively ideas to move forward virtually during this time of social distancing. Check out www.albinism.org/fun for event updates to bring the community together during these unique times. If you’d like help working through a creative fundraising idea, we invite you to reach out to the Spring for NOAH team at fundraise@albinism.org

Posted: March 16th, 2020

Youth Opportunities

Michael J. McGowan Leadership Scholarship

As applications for the 2020 Michael J. McGowan Leadership Scholarship begin to roll in, we invite you to get to know the 2019 recipient, Trisha Laughlin! Learn more about Trisha, her involvement with NOAH, and what advice she has for this year’s applicants! Apply by May 1st at www.albinism.org/leadership/.

Posted: March 16th, 2020

Reminder: Apply for NOAH’s Junior Advisory Council

Young-adult members of the albinism community (approximately ages 18–30) are invited to learn more about NOAH’s Junior Advisory Council. Serving on the Junior Advisory Council is a great way for your voice to be heard by NOAH and to help NOAH serve the needs of young adults! Full details and application at www.albinism.org/junior-advisory-council. Apply by May 1, 2020.

Posted: March 16th, 2020

Team See Possibilities’ Global Scholars Program

The Team See Possibilities’ Global Scholars Program for legally blind students is designed to help alleviate a part of the financial burden for students with visual impairments in their college expenses and includes a Mentorship Program to assist Scholars through the transition from high school to college, as well as help them create tangible career pathways for their future. The application deadline is April 30th. Learn more about this opportunity at http://www.teamseepossibilities.com/global-scholars-program…

Posted: March 16th, 2020

NOAHCon2020 Registration is open!

We are thrilled to announce that registration for NOAHCon2020 is officially open! Often described as a fun, festive family reunion, NOAH’s biennial conference is the most comprehensive albinism education program anywhere and affords plenty of time to socialize and enjoy fellowship. Learn more about what we have in store for you this summer and register today at www.albinism.org/noahcon2020.

Posted: March 2, 2020

Educational Programming

The NOAH conference always packs in a ton of educational content and this year is no exception! In addition to our popular pre-conference Mothers’ and Low Vision Driving Workshops, essential educational sessions include: Genetics of Albinism, What do People with Albinism See, Parenting a Child with Albinism, Advocating for your Student, Parenting without Pigment, Resources for Adults with Albinism, Workplace Topics, and Low Vision Driving.

Conference veterans and first-timers alike can look forward to these new and enhanced programming highlights for 2020:

Adults with albinism. Connect and network with others through informative sessions and social activities.
Careers. Explore the building blocks of finding and navigating your career path with albinism.
Parents/Families. Expand your knowledge and community of support by bridging medical and educational information with social engagement.
International. Raise awareness of, and connect with international albinism communities.

Ready to sign up? Learn more at: www.albinism.org/noahcon2020/program/.

Posted: March 2, 2020

Social Activities

This year’s social activities team has assembled a creative collection of opportunities to take in the beauty and culture of Southern California with friends from the albinism community at a variety of price points. Wine tasting, lunch at an historic packing house, a presidential library tour, sunset at Huntington Beach, California classic In – N – Out Burgers fresh off the food truck at the conference hotel, and an exclusive movie theater screening of a feature film about a girl with albinism are among the many options that await. There really is something for everyone! Space is limited, so check out the offerings and register today. www.albinism.org/noahcon2020/activities/.

Posted: March 2, 2020

Shark-tacular Kids’ Conference

While their adults attend Educational Sessions, NOAH kids, tweens, and teens get to learn, play, and socialize at the action-packed Kids’ Conference. Attendees are divided into groups by grade level/age and enjoy engaging, age-appropriate activities throughout the conference.

To learn more visit www.albinism.org/noahcon2020/kids-conference/

Posted: March 2, 2020

Announcing NOAH Junior Advisory Council

Announcing the NOAH Junior Advisory Council

NOAH is creating a Junior Advisory Council to provide young-adult members of the albinism community an opportunity to become more involved in the direction and leadership of NOAH. The Junior Advisory Council will discuss the needs of young adult members of the albinism community (approximately ages 18–30). Serving on the Junior Advisory Council is a great way for your voice to be heard by NOAH and to help NOAH serve the needs of young adults! Full details and application at www.albinism.org/junior-advisory-council. Apply by May 1, 2020.

Posted: March 2, 2020

15th Annual Winter Burn Bowl-a-thon

Check out highlights from the 15th Annual Winter Burn NOAH Bowl-a-thon as featured on our Instagram takeover! View the full coverage on our Instagram highlights at https://www.instagram.com/sto…/highlights/18056817997206789/. Shout out to the Adamo family for their tremendous commitment and dedication to NOAH!

Posted: February 17th, 2020

Spring for NOAH

In celebration of our 15th anniversary, let’s make this year the year we finally fill in the map! If you live in a state that’s represented in gold, we need YOU to help us bring #SpringForNOAH to all 50 states (and yes, we need our friends in Canada to join in the fun too!). Whether you’ve hosted an event before, or you’re considering hosting this year for the very first time, NOAH is here to help you every step of the way. Learn more at www.albinism.org/fun/

Posted: February 17th, 2020

NOAHCon Personal Grant Program Early Deadline

NOAH’s Conference Personal Grant early application deadline is just one week away! All applications submitted by Monday, February 24th at 9am ET will be reviewed on or before Monday, March 2nd.

The Personal Grant Program helps those who, without assistance, would not be able to afford to attend the conference. Those who live nearest to the conference, and those who have never attended a conference before will receive priority for financial assistance. Applicants must contribute to the cost of attendance.

The Personal Grant Program will not fund the full cost of attendance. Be sure to check out the Funding Sources Information Packet for helpful tips and suggestions for conference funding assistance.

Posted: February 17th, 2020

Why do YOU Heart NOAHCon?

We’ve heard from adults with albinism, kids with albinism, kids of adults with albinism and siblings of kids with albinism, and we’d love to hear from YOU! Check out the videos we’ve received at www.albinism.org/noahcon2020/iheartnoahcon/ and share your I Heart NOAHCon video with info@albinism.org today!

Bianca McEvoy in the News

Shout out to NOAH member Bianca McEvoy in the news! A captain of her high school cheer squad, Bianca’s team recently placed ninth at nationals! Congratulations! longisland.news12.com/story/41686171/blind-oyster-bay-hs-cheerleader-defies-the-odds-on-the-mat…

Posted: February 17th, 2020

It’s Time to Spring for NOAH

We’re Here to Help!
Event Planning Teleconference

Join us for the Spring for NOAH Event Planning Teleconference! Designed for anyone who wants more information on setting up a NOAH fundraiser, these calls provide the opportunity to speak directly with an experienced fundraising event host! Pick the day and time that works best for you! Wednesday, February 5th or Saturday, February 8th. Details at www.albinism.org/learn-how

Twin City Connections

For host Matt K, making friends in the local albinism community is a key element of the annual Twin Cities Bowl-a-thon fundraiser. Learn more about hosting an event in your area at https://www.albinism.org/fun/

“Hosting a bowl-a-thon has been a great way for me to connect with people locally in the albinism community. We help support NOAH by raising funds and making friends. Looking forward to the 2020 bowl-a-thon.” -Matt K., Minneapolis, Minnesota

Posted: February 3rd, 2020

Check Out Our New Spring for NOAH Dashboard!
Now it’s easier than ever to sign up to become a participant, make a donation, or support a participant or team! https://app.donorview.com/zAAVY

Posted: February 3rd, 2020

NOAHCon2020
Registration Fees Announced

Double registration fee discounts available for attendees registering by the early deadline (4/13/2020) and staying at the conference hotel! Registration is scheduled to open the week of 3/2/2020! Details at www.albinism.org/NOAHCon2020/#register

Posted: February 3rd, 2020

Figuring Out Conference Funding

In an effort to help attendees figure out conference funding, NOAH is delighted to offer two great resources! The Funding Sources Information Packet (https://www.albinism.org/noahcon2020/#funding) provides tips and suggestions for conference funding assistance, and NOAH’s Conference Personal Grant Program (https://www.albinism.org/noahcon2020/#personal-grant) is an additional resource to help bridge the funding gap for those who, without assistance, would be unable to attend.

Posted: February 3rd, 2020

Why do YOU Heart NOAHCon?

If you’ve attended a NOAH conference previously, we want to hear from you! What do YOU love about NOAHCon? Send us a 30-second video by February 10th for a chance to be featured on NOAH Social Media as part of our IHeartNOAHCon celebration leading up to Valentine’s Day! Check out these sweet videos from Kara and Emma, and Elise!

Posted: February 3rd, 2020

2020 Michael J. McGowan Leadership Scholarship

The 2020 Michael J. McGowan Leadership Scholarship Application is now open! This year’s $3,000 scholarship will be awarded to an undergraduate student with albinism residing in the U.S. or Canada who is enrolled in an undergraduate program at a U.S. or Canadian institution of higher education. The application deadline is May 1, 2020. Apply at www.albinism.org/leadership.

Posted: February 3rd, 2020

It’s Time to Spring for NOAH

Join us as we kick off NOAH’s 15th Annual Fundraising Season and add your name to the growing list of 2020 event hosts! Our team is ready to support you every step of the way as you create an event that is uniquely you. Bowl-a-thons, picnics, parties, and all kinds of other FUN events help bring the community together and provide crucial support for NOAH! Can NOAH count on you? Learn more or find an event near you at www.albinism.org/fun.

Posted: January 20th, 2020

Albinism Insight Submission Deadline

Do you have a story you’d like to share with the albinism community? Send in your submissions for the Spring Edition of Albinism InSight by January 22nd to ai@albinism.org. Learn more about scheduled topics at https://www.albinism.org/albinism-insight-call-for-content/

Posted: January 20th, 2020

Congratulations Donte’ Mickens!

Join us in congratulating to NOAH Board Chair, Donte’ Mickens, on being inducted to the Susan Daniels Disability Mentoring Hall of Fame! https://ndmc.pyd.org/national-coalition-announces-the-2019-inductees-of-the-susan-daniels-disability-mentoring-hall-of-fame/

Posted: January 20th, 2020

Eye Fatigue

PWA’s – let’s talk about eye fatigue. How do you experience and manage eye fatigue? What are your triggers? Join the conversation on Facebook!

Posted: January 20th, 2020

Happy New Year!

Happy New Year to the NOAH community! We wish you all a healthy, prosperous year ahead! Thank you for being part of our community!

Posted: January 6th, 2019

Two New Teens in NOAH’s Teen Spotlight

Valerie M. and Samantha H. share their stories with NOAH’s Teen Spotlight! Teens with albinism… Do you have something to say, share, inspire or commiserate? Share your thoughts, accomplishments, concerns, dreams…anything as part of Teen Spotlight! Send your story to teenspotlight@albinism.org or learn more at www.albinism.org/teenspotlight.

Posted: January 6th, 2019

Parent Connections Schedule

Check out the terrific slate of calls coming up for NOAH’s Parent Connections in 2020! Learn how to join this free parent support teleconference program at www.albinism.org/parent-connections!

Posted: January 6th, 2019

Albinism Insight

Have you read the latest issue of Albinism InSight? There’s still time to subscribe and receive this beautiful issue with a special feature on albinism and entertainment! Subscriptions begin at just $10 per year for electronic delivery www.albinism.org/albinism-insight-subscription/

Posted: January 6th, 2019

Kudos to Caroline

Last month, author Kate Hancock and illustrator Lane Gregory, visited NOAH member Caroline V.’s school to share their book SPOTLESS, a story about a young giraffe, Sinclair, that is born with albinism and learns to live without spots. Ms. Hancock and Ms. Gregory traveled to South Carolina to honor Caroline’s contribution to the book: “Top Ten Things You Should Know About Albinism”. Kudos to Caroline on having her work published in this book, and special thanks to Kate and Lane for their efforts to accurately portray albinism and for recognizing Caroline in this way! www.albinism.org/books

Posted: December 23rd, 2019

Thank You Parent Liaisons

Thank you to our wonderful team of parent liaison volunteers! Providing the perspective of someone who truly understands, our amazing volunteers are available to new parents as they embark on their albinism journey, and guide families through the many available NOAH resources. www.albinism.org/parents

Posted: December 23rd, 2019

Celebration of Persons with Albinism on UN Human Rights Day

NOAH members Marleena Barber and Natalie Devoramonifa participated as panelists in the first-ever discussion and celebration of persons with albinism in the state of California at the Marlborough School. Part of the NYDG Foundation ColorFull campaign, the panel was moderated by Stephan Bognar and also included Diandra Forrest, Dr. Rebecca Kammer, Dr. David Colbert, and Laurent Sauveur from the UN.

Posted: December 23rd, 2019

USABA Winter Events

There are two great United States Association of Blind Athletes skiing events coming up in 2020! Check out the Vermont Winter Ski Festival in Killington, Vermont and the Anthem Winter Sports Fest in Breckenridge, Colorado today. Application deadlines are in early January.

Posted: December 23rd, 2019

Dallas Cowboys Cheerleader Raises Albinism Awareness

Dallas Cowboys cheerleader Kat, whose cousin has albinism, chose albinism awareness for her My Cause My Boots earlier this month. Thank you, Kat and the Dallas Cowboys Cheerleaders for raising albinism awareness!

Posted: December 23rd, 2019

Scholarship Opportunity

The American Council of the Blind has a great opportunity for students who are legally blind to earn a scholarship. Eligible students are legally blind with a minimum 3.0 GPA and school/local community involvement.

Learn more and apply at https://acb.org/scholarships

Posted: December 23rd, 2019

Volunteer as a New App Tester

The National Research & Training Center is recruiting youth with low vision and their parents to test their new career preparedness app 4to24! To volunteer as a tester, complete the application at https://msstatecoe.co1.qualtrics.com by December 31st.

Posted: December 23rd, 2019

Giving Tuesday

We are delighted to announce that we raised more than $8,000 on Giving Tuesday! Thank you to everyone who supported NOAH to make it such a success.

Posted: December 11th, 2019

Congratulations Sueanna

Join us in congratulating NOAH member, Sueanna P. Johnson, who was recently appointed to the Colorado Court of Appeals! Sueanna’s appointment begins on February 13, 2020. https://www.colorado.gov/governor/news/gov-polis-appoints-new-court-appeals-judges?fbclid=IwAR1bzjlPAkU4ZT-OqhI7efbAy7dAmih5_rBE-t4gU0UBjS2Hc2KVabE1q3U

Posted: December 11th, 2019

Navigating Winter Weather

Let’s talk about navigating winter weather with low vision and photophobia! Do you have a favorite strategy for tackling slippery, slushy, and snowy surfaces? A go-to winter hat that provides warmth and protection from snowy glare? Cane and guide dog users — what additional strategies or precautions do you implement in inclement weather? Join in the conversation on NOAH’s Facebook page.

Posted: December 11th, 2019

Crandall University Research Study

Visually impaired adults ages 18-30 are invited to participate in a qualitative study being conducted at Crandall University in Moncton, NB. “Self-Concept and Motivation in the Visually Impaired/Blind” aims to better understand the experience of having a visual impairment/blindness in emerging adulthood, specifically how it impacts the self-concept and motivation. Learn more at https://www.albinism.org/research/

Posted: December 11th, 2019

Happy Thanksgiving!

We at NOAH wish you and your loved ones a safe and Happy Thanksgiving! #Thankful #Thanksgiving2019

Posted: November 25th, 2019

NOAHCon2020 Theme

Shout out to the community members who shared more than 80 different conference theme ideas. After careful consideration and deliberation, we are excited to announce the NOAHCon2020 Conference Theme – A Vision Beyond 2020.

Posted: November 25th, 2019

Join the Albinism InSight Team

Calling all writers! Would you like to join the 2020 Albinism InSight team as a volunteer writer? Email Brandi at bdarby@albinism.org to learn more!

Posted: November 25th, 2019

Holiday Gift Ideas

NOAH is in search of holiday gift ideas for visually impaired loved ones of all ages! Join the Facebook discussion to share ideas for creative or useful gifts that have you given or received.

Posted: November 25th, 2019

Positive Portrayal and Self Acceptance

“I think it’s important for everyone to accept themselves – I want albinism to be portrayed in a good light through the media.” Meet Kimberlee, a British teen with albinism pursuing her dream of becoming a model. https://youtu.be/gYjlFu0pltw

Posted: November 25th, 2019

Change the Way the World Sees Albinism

Diandra Forest, a global ambassador of NYDG ColorFull, invites you to help change the way the world sees albinism. Together with United Nations Human Rights, NYDG Foundation is observing International Human Rights Day (12/10) with a global campaign advocating for the rights for people with albinism to live free from discrimination, deprivation, and fear. https://www.nydgcolorfull.org

Posted: November 25th, 2019

NOAH in Orange County

This past weekend, NOAH’s Board of Directors and Core Planning Team gathered in Orange County, at the NOAHCon2020 conference hotel. Join us thanking our dedicated volunteers for their service!

Posted: November 11th, 2019

Bites with the Board

Thanks to the 40 community members who attended tonight’s Bites with the Board! Such a wonderful evening filled with great conversation and connections, paired with delicious food and friends. We look forward to seeing everyone at #NOAHCon2020!

Posted: November 11th, 2019

From One Parent to Another: Everything is Going to Be Alright!

Parenting and worrying go hand-in-hand, but many of the added worries parents of a newly diagnosed child with albinism face are often unfounded. So, we asked parents on our Facebook page to give examples of something they wish they hadn’t worried about when their child was newly diagnosed. If you’re on Facebook, join in on the discussion!

Posted: November 11th, 2019

There’s No Place Like Home for the Holidays

We asked our online community to share their holiday travel tips as we begin the hectic holiday season! Add your voice to the discussion on our Facebook page!

Posted: November 11th, 2019

Learn About Ocular Albinism with Lincoln!

NOAH member, Lincoln, starts in this lighthearted video, created by his dad, as a fun way to explain his ocular albinism to teachers and classmates at school. Check it out at https://www.facebook.com/josh.forbes1/videos/10162586841540296/

Posted: November 11th, 2019

Participants Needed in Bioptic Driving Research Study

If you hold a valid U.S. Driver’s license, which requires the use of a bioptic telescope to drive, you’re invited to participate in a research study to understand how drivers with visual impairments use their bioptic telescopes when they drive. You can learn more at https://www.albinism.org/…/uploa…/2019/10/ANVI2019_Flyer.pd

Posted: November 11th, 2019

Where’s Mike?

Executive Director, Mike McGowan has been very busy lately! Last week, he delivered the keynote address at the Albinism Fellowship UK & Ireland Family Conference, “This is Me”. Upon returning to the states, Mike made the trip to Orlando, Florida for the World Congress of Optometry where he not only shared information to increase albinism awareness but was also invited to speak to 50 low vision optometrists. Most recently, Mike attended the American Academy of Pediatrics conference in New Orleans, Louisiana where he shared his knowledge and spread albinism awareness amongst pediatricians. Thank you, Mike, for representing NOAH and albinism across the United States and beyond!

Posted: October 28th, 2019

37 Years of NOAH

In celebration of NOAH’s 37 wonderful years, take a look back at our journey with NOAH News & Albinism InSight!

Posted: October 28th, 2019

Low Vision Trick or Treating Tips & Tricks

In preparation for Halloween this week, we reached out to our online community for tips & tricks for trick or treating. From creative uses for glow sticks to incorporating the white cane into a costume, or having a buddy system, NOAH members shared so many fantastic ideas. Check out the conversation on our Facebook post to read more awesome tips or share your own!

Posted: October 28th, 2019

NOAH Parent Appreciation

Recently, we asked adults with albinism in our social media community, “what was one of the best things your parent(s) did for you growing up?” From “forgetting” that they had albinism, to teaching them to have high standards for themselves, adults shared how their experiences shaped them into the adults they are today! Join in on the conversation on NOAH’s Facebook page.

Posted: October 28th, 2019

Parent and Grandparent Connections Upcoming Calls

We have great calls coming up next week for both Parent Connections and Grandparent Connections:
Parent Connections: Monday, November 4th, 8 pm CT, Albinism and Self Esteem
Grandparent Connections: Tuesday, November 5th, 12 pm CT, Career Panel of Adults with Albinism
It’s not too late to join! If you are interested in participating in one of these calls please fill out the Parent Connections intake form, or the Grandparent Connections intake form.

Posted: October 28th, 2019

Albinism & Entertainment

For the winter issue of Albinism InSight, we’re asking, “How has albinism shaped your relationship to entertainment?” Whether finding seats in a movie theatre, adjusting the accessibility settings on Netflix, or navigating dark and wire-filled backstages as a performer, people with albinism contend with a unique set of obstacles and opportunities relating to entertainment. You may be a performer or an audience member; you may prefer concerts or live comedy; you may be a musician, poet, or agent. We want to hear from YOU! Share your insights with ai@albinism.org by October 23rd!

Parent Liaison of the Year

Join us in congratulating NOAH’s 2019 Parent Liaison of the Year, Anne Contant. Anne has been instrumental in improving NOAH’s Parent Liaison Program to meet the specific needs of adoptive parents. She is a dedicated and knowledgeable volunteer with an endless willingness to help others! Thank you, Anne, for sharing your time, energy and passion as a NOAH Parent Liaison!

NOAH Members in the News

NOAH SCIVIS scholarship recipients Grace and Bianca, along with our very own Dan Oates were featured in this local TV interview about SCIVIS! Check it out at https://whnt.com/2019/10/02…

Dr. Niya PIcket Miller Ted Talk

We are delighted to share the recording of NOAH parent, Dr. Niya Pickett Miller’s powerful TED talk presented during TEDxBirmingham last May.https://youtu.be/vQ0u5AOIuII

Accessibility Features

If you’ve ever struggled to access the accessibility features on your device or application, you’ll want to check out these great instructional videos by the Hadley Institute for the Blind and Visually Impaired.https://hadley.edu/InstructionalVideos/

Countdown to NOAHCon 2020

We can’t contain our excitement about our upcoming NOAHCon 2020. Join us as we count down the days until the NOAH community is together again at https://www.albinism.org/noahcon2020!

You Can’t Be Serious!

Congratulations to the Mintu and Davis families for hosting a successful fundraiser earlier this month! This fun-filled event featured the award-winning Acts of Kindness Cabaret performing “You Can’t Be Serious!” and a wonderful time was had by all. Thanks so much to our wonderful event hosts and everyone who attended and donated!

Tell Your Teacher!

Did you know that NOAH offers a free publication geared towards educators called NOAH Ed U? This quarterly publication is a supplement based on Albinism InSight that includes featured articles pertinent to educators working with students with albinism. Encourage your child’s teacher to sign up today and check out previous issues of NOAH Ed U at www.albinism.org/ed-u!

Beyond Black and White

Have you seen this Great Big Story video from a few years ago, about model, Diandra Forrest?
https://www.greatbigstory.com/stories/beyond-white-and-black

Participate in the 2nd Annual National Blind Sports Day!

National Blind Sports Day (NBSD

) is less than a month away and we can’t wait to celebrate! Will you join thousands of others across the country in increasing awareness of sports for the blind and promoting inclusion on Saturday, October 5th? The goal of National Blind Sports Day is to celebrate abilities of and opportunities available to Americans with visual impairments and increase awareness of sports for the blind. It’s easy to help others in the albinism community find an activity they love, and showcase to society that sport and recreation is for everyone! Learn more at www.albinism.org/nbsd.

Steps to Visual Independence

This summer, Dr. Anne Corn presented an informative podcast about steps to visual independence for students who are blind or visually impaired. This presentation addresses visual reach, extending visual reach, visual efficiency and visual independence, which are concepts she introduced to the NOAH community in her Spring 2017 article published in Albinism InSight. Listen to the podcast and read the article at https://renwickcentrepodcast.podbean.com/e/episode-18-dr-anne-corn-the-renwick-centre-podcast/

Jasmine Star Movie

Have you heard about Jasmine Star Movie, a coming-of-age feature film about a teenager with albinism who wants to be a model? Check it out at https://www.jasminestarmovie.com.

NOAH Kiddos are Back to School

We have loved seeing photos from our NOAH community as the new school year gets underway. Remember to tag @noahalbinism in your back to school posts and use our hashtag #NOAHBackToSchool19 if you’d like your pics featured in our social media story!

That’s How NOAH Rolls!

We are thrilled to announce that we have reached our fundraising goal of $150,000 – and we even convinced Executive Director, Mike McGowan, to share his best dance moves for the occasion! Check out his happy dance in our recent video, and join us in celebrating this incredible victory. Our sincerest thanks to everyone who hosted, attended or donated to one of the many NOAH Bowl-a-thon and Spring Fundraiser events over the last several months. We couldn’t have done this without YOU!

Welcome New NOAH Board Members
NOAH is excited to announce the election of three new board members. Please join us in welcoming Emma Brinkley, Antonia Lliteras Espinosa, and Christie Falco to the NOAH Board of Directors. Learn more about Emma, Antonia, and Christie at www.albinism.org/board-of-directors.

Michael J. McGowan Leadership Scholarship – Where Are They Now?

NOAH was excited to receive an update and note of thanks from Cassandra Mendez, the 2015 recipient of the Michael J. McGowan Leadership Scholarship. Cassandra recently graduated from The Ohio State University with a degree in Computer Science & Engineering with a minor in Mathematics. Check out her message at www.albinism.org/scholarship-cassandra.

Back to School with NOAH!

As we are in the thick of the back to school season, NOAH is on the lookout for your back to school pics! To be included in our Back to School social media story, tag NOAH in your pics and use the hashtag #NOAHBackToSchool19!

While you’re online sharing your photos and back to school tips, don’t forget to check out NOAH’s wonderful school readiness resources at (https://www.albinism.org/noah-schoolkit-care-project-and-connection-programs/).

Confidential Community Connections: Albinism & Melanoma

On behalf of a community member facing medical choices with the unique consideration of albinism, NOAH is seeking to facilitate confidential connections between a community member facing treatment for melanoma. If you are willing to confidentially share your experiences about treatment and outcomes, please email laubrey@albinism.org

Who’s Waiting for YOU in Atlanta?

With our 2019 Adult Weekend registration deadline less than 2 weeks away, we’re getting so excited about this awesome upcoming event. Still on the fence about joining us? Check out this Albinism InSight article written by an attendee of Adult Weekend Nashville in 2003, called “Touched by Sameness.” We know you won’t want to miss out on the “incredible, instant bonding that often occurs when people with albinism gather together,” so register today at www.albinism.org/adult-weekend! Limited personal grant funding still available!

Adults with Albinism Weekend

Getting Excited for Atlanta!
Did you know that the Adults with Albinism Weekend registration fee includes more than discussion groups? Registration also includes dinner at Pitypat’s Porch on Friday evening, World of Coca-Cola and Atlanta Aquarium admission, and Sunday continental breakfast! Check out the full schedule at https://www.albinism.org/adult-weekend/#details

Need a Roommate?

Are you attending Adult Weekend and looking to save on hotel costs? Email info@albinism.org to be placed on the room share contact list today! NOAH will facilitate introductions between individuals on the list but is not providing roommate matching services.

Community

Confidential Community Connections: Radiation Treatment for Prostate Cancer

On behalf of a community member facing medical choices with the unique consideration of albinism, NOAH is seeking to facilitate confidential connections between males with albinism regarding radiation treatment for prostate cancer. If this applies to you, did your doctors have any concerns about potential negative effects of radiation on skin with little or no pigment? What were the results of the treatment? If you are you willing to confidentially share your experiences, please email laubrey@albinism.org.

NOAHCon2020

Saving for NOAHCon2020?

NOAHCon2020 is just 46 weeks away and many NOAH members are already saving up to be a part of this life-changing experience! Do you have a change jar or a special savings account? Are you skipping that latte and saving the cash? Taking public transit instead of an Uber or Lyft? Share your money-saving tips on our Facebook, Instagram, or Twitter posts to help out fellow community members!

Sports

2nd Annual National Blind Sports Day
Save the date for fitness and fun on Saturday, October 5th! NOAH is excited to join the USABA in celebration of the 2nd Annual National Blind Sports Day. Join in on the celebration to help others in the albinism community find an activity they love and showcase to society that sport and recreation is for everyone! Learn more about how to get involved at www.albinism.org/nbsd.

Football Player with Albinism Makes Big Impact

Check out this news feature about high school Senior, Tayshaun Smith, of Delray Beach, Florida, a hard-working football player who happens to have albinism.

They’re Going to Space Camp!

Join us in congratulating the 2019 NOAH SCIVIS Scholarship Winners! We can’t wait to hear all about your adventures at Space Camp in Huntsville this fall!

Posted: August 6th, 2019

Who is Waiting for YOU in Atlanta?

When adults with albinism gather, something magical happens. Differences in cultures, ethnicity, age and more fade and similarities of experiences take center stage! Friendships are forged and lives are changed. Don’t miss this exciting weekend of fun times with friends new and old – register today at www.albinism.org/adult-weekend!

Posted: August 6th, 2019

This One Time at NOAH Camp…

A wonderful time was had by all who attended our 2019 Family Camp this July! Campers of all ages had a blast spending time together, and even made their own tie-dyed t-shirts (pictured). NOAH offers an enthusiastic shout out to Lions Camp Pride for being great hosts and a huge thank you to all the participating families and volunteers for making memories with your NOAH family!

Posted: August 6th, 2019

Thank You for the Music!

Congratulations to NOAH Member, Marleena Barber, on celebrating the 10-year anniversary of her one-woman cabaret show, “Thank you for the Music!”. If you’re in Southern California, check it out at the Ruth B. Shannon Center for the Performing Arts on Saturday, September 21st! You can learn more at www.shannoncenter.org/events/marleena-barber.

Posted: August 6th, 2019

Albinism Represented in International Cosmetics Campaign

Shout out to community member, Jennifer Renee! She was featured in a recent Urban Decay Cosmetics campaign launching their new line of foundation that includes 50 different shades. Congratulations!

Posted: August 6th, 2019

Conference Hotel Announced!

NOAH is delighted to announce the host hotel for #NOAHCon2020 – the Hyatt Regency Orange County! The discounted attendee room block will open in early 2020, with rates beginning at just $159/night plus tax and fees! Learn more at www.albinism.org/NOAHCon2020. We can’t wait to see you in Orange County!

Posted: July 22, 2019

How Are You Saving for NOAHCon2020?

Now is the time to start saving for next year’s NOAH conference! We all know that saving a little each week can add up to a lot! If you could put aside just $20/week between now and the conference, you’d have more than $1,000 to help with expenses! Join the Facebook conversation and share your best savings tips and tricks with the community!

Posted: July 22, 2019

NOAH Wants to Hear from You!

Do you have an idea for a topic that you’d like to see NOAH address at the Adult Weekend, NOAH Conference 2020 or any future programming? If so, just email info@albinism.org with your ideas!

Posted: July 22, 2019

Albinism InSight Submission Deadline

The submission deadline for the Autumn edition ofAlbinism InSight is just around the corner! Check out the full list of topics and share your insight with ai@albinism.org by July 24th!

Posted: July 22, 2019

Rare Artist Contest

The EveryLife Foundation for Rare Diseases Rare Artist Contest showcases both the artwork and the artist to help raise awareness about rare diseases and their community. The contest is open to rare disease patients and their family, friends andcaregivers, as well as researches and medical professionals. Artists four and older are welcome. The contest is open through September 30th. To learn more visit https://www.rareartist.org/2019-art-contest/

Posted: July 22, 2019

Subscribe to Albinism InSight Today

Have you seen the latest issue of Albinism InSight? Subscriptions to NOAH’s full-color, quarterly magazine begins at just $10 for electronic and $30 for US postal mail delivery. Don’t miss a single issue – subscribe today at https://www.albinism.org/albinism-insight-subscription/.

Posted: July 8th, 2019

NOAH Ed U: Summer 2019 Edition

The summer edition of NOAH’s complimentary supplement, geared toward educators, based on our quarterly magazine, Albinism InSight, is now available! We encourage you to share this publication with educators who work with children with albinism! Check it out at www.albinism.org/ed-u.

Posted: July 8th, 2019

Marleena the Snow Queen

NOAH member and volunteer, Marleena Barber, shares advice on albinism, music & theater! Get to know her more at https://madameactivist.wordpress.com/2019/03/31/marleena-barber-advice-on-albinism-music-and-theater…

Posted: July 8th, 2019

Community Hobbies

We’ve loved hearing about all the hobbies you have despite having albinism! From photography, quilting, crochet, music, and athletics, having albinism is so much more than its limitations! Join in the conversation on Facebook at https://www.facebook.com/NOAH.Albinism/photos/a.455214584534464/2254270994628805

Posted: July 8th, 2019

Photo Exhibition – White Ebony

On June 13th, CNN shared a piece about “White Ebony”, a photo exhibition created by Nigerian photographer Yetunde Ayeni-Babaeko to depict “the complexity of life that Persons with Albinism (PWA) face daily”. Check it out at https://www.cnn.com/style/article/world-albinism-day-yetunde-babaeko-intl/index.html

Posted: July 8th, 2019

IAAD Celebrations

Check out how members of the albinism community celebrated IAAD below. We want to know how you celebrated. Send your photos to iaad@albinism.org!

NOAH at the United Nations

NOAH Executive Director Mike McGowan and local members of the albinism community gathered at the United Nations Headquarters in celebration of the 5th anniversary of IAAD.

IAAD Times Square

Members of the albinism community gathered in Times Square for the historic photo opportunity celebrating international albinism awareness day and launching the NYDG Foundation’s Colourfull campaign featuring people with albinism!

Posted: June 24th, 2019

Congratulations, NORD Rare Impact Awardee, Donna Appell!

Saturday night in Houston, Donna Appell was honored with a #RareImpactAward for her tireless work on behalf of people with HPS! We’re so proud that Donna is part of our NOAH family! Check out her acceptance speech on Facebook!

Posted: June 24th, 2019

Adults with Albinism Weekend Personal Grants

Are you interested in attending Adults with Albinism Weekend Atlanta, but looking for a way to bridge the funding gap? NOAH is delighted to announce that limited personal grant funding to attend is now available. Apply by July 10th at https://app.donorview.com/LxWg.

Posted: June 24th, 2019

Serving on NOAH’s Board of Directors

Would you like to join our Board of Directors? The programs and services that NOAH provides to the albinism community supply essential information and support like no other organization – and NOAH’s board of directors play a crucial role in the work that NOAH does. Members of the board are responsible for governance, serve a four-year term, volunteer on a board standing committee, support efforts to fund NOAH programs and attend two in-person meetings annually. If you’re interested in changing lives in the albinism community through service on NOAH’s Board of Directors, email info@albinism.org to learn more!

Posted: June 24th, 2019

Positive Exposure on UN TV!

Learn more about Positive Exposure directly from the amazing Rick Guidotti in this in this Global Connections Television interview! Thank you, Rick, for all that you do! https://www.globalconnectionstelevision.com/video-gallery/2019/6/12/rick-guidotti-on-gctv…

Posted: June 24th, 2019

International Albinism Awareness Day Celebrations

IAAD is this Thursday, June 13th! Community members have planned some great events to celebrate Thursday and beyond, including a Northern Illinois NOAH Picnic, a Family Fun Walk in Alaska, and a Historic Photo opportunity in Time Square, and a Picnic in California. Visit www.albinism.org/iaad for more details, and to access resources to help you celebrate and promote albinism awareness. Planning an event? There’s still time to add your celebration to the list – email iaad@albinism.org

Posted: June 10th, 2019

Still Standing Strong!

NOAH is delighted to present this video of community members sharing their message of what makes them feel strong and empowered in celebration of #IAAD2019! What makes you feel strong and empowered?

Posted: June 10th, 2019

Congratulations Honorable Mention Scholarship Applicant: Sarah Kane

Join NOAH in congratulating Sarah Kane for being recognized as an honorable mention application for the 2019 Michael J. McGowan Leadership Scholarship Award. Learn more about Sarah on her teen spotlight page at https://www.albinism.org/teen-spotlight-sarah-k/.

Posted: June 10th, 2019

Last Chance to Register for NOAH Family Summer Camp 2019

Don’t miss out on your final chance to be part of the NOAH Family Camp 2019! Limited registration spots and attendee personal grants are available through June 14th so don’t wait and register today at https://www.albinism.org/NH-CAMP

Posted: June 10th, 2019

Interview with 2016 Paralympic Games Bronze Medalist

Check out this interview with NOAH member and 2016 Paralympic Games bronze medalist, Marybai Huking, who is preparing for the IBSA Goalball International Qualifier! Best of luck to Marybai and her teammates when they compete next month in Fort Wayne

Posted: June 10th, 2019

Michael J. McGowan Leadership Scholarship Winner

NOAH is to announce that Trisha Laughlin has been named the 2019 Michael J. McGowan Leadership Scholarship winner! Trisha is a rising sophomore nursing student at Simmons University in Boston, Massachusetts! Congratulations, Trisha!

Posted: May 28th, 2019

NOAH at Perkins Early Connections Conference

Thank you to the MacDonald family for representing NOAH and connecting with other families in New England at the Perkins School for the Blind Early Connections Conference last month!

Posted: May 28th, 2019

Holman Prize Finalists
Two people with albinism among this year’s Holman Prize Finalists!

Shout out to NOAH IAAD Coordinator, Natalie Devora and past Albinism InSight contributor, Bonface Massah, on their selection as Holman Prize finalists! Learn more about the finalists and their projects at http://lighthouse-sf.org/2019/05/15/announcing-the-2019-holman-prize-finalists

Posted: May 28th, 2019

Song of Hope

With #IAAD2019 less than three weeks away, we are delighted to share “Song of Hope.” Created to promote awareness and respect for people with albinism, this music video features a chorus of Namibian school children and African singer Dolar Yves https://www.youtube.com/watch?v=nqyFw-FJL8k&feature

Posted: May 28th, 2019

What Makes YOU Feel Strong or Empowered?

In celebration of International Albinism Awareness Day 2019’s theme “Still Standing Strong”, NOAH is asking people with albinism: What Makes YOU Feel Strong or Empowered? Be a part of a video project celebrating YOU – email a short video clip or photo (with a brief explanation) showing you doing something that makes you feel strong and empowered to info@albinism.org no later than June 1, 2019.

Posted: May 13th, 2019

NOAH Family Summer Camp

TBT to amazing memories from NOAH Family Summer Camp 2017 – an unforgettable opportunity for children with albinism and their families to share a fun-filled outdoor vacation with others like them, building memories that last a lifetime! Register by May 15th to secure your spot! A limited number of registration fee personal grants are still available! www.albinism.org/nh-camp

Posted: May 13th, 2019

Educating Future Optometrists

At the end of April, NOAH Executive Director Mike McGowan made his annual visit to speak with Dr. Tracy Matchinski’s students at the Illinois College of Optometry. Thank you, Dr. Matchinski for inviting Mike to educate future optometrists about albinism!

Posted: May 13th, 2019

Musician Raising Albinism Awareness

Meet Lazarus, a Malawian musician with albinism working to dismantle cultural stereotypes through his music! Learn more about his story at https://www.bbc.com/news/entertainment-arts-48021425

Posted: May 13th, 2019

International Albinism Awareness Day

A Guide to Community Outreach and Engagement

New this year, NOAH offers resources to enhance the ways to raise albinism awareness in celebration of International Albinism Awareness Day! Our “Options for Community Outreach and Engagement” guide details how to engage in your community through speaking opportunities, making a personal connection with your audience! Check out this and other resources at www.albinism.org/iaad/#resources.

IAAD Proclamation

Requesting a Proclamation/Resolution/Certificate in honor of International Albinism Awareness Day (IAAD) is a powerful way to spread albinism awareness. New this year, NOAH resources include draft language and a document explaining how to make the request of your local, state, or federal elected officials! Learn more at www.albinism.org/iaad/#resources

Posted: April 29th, 2019

Space Camp Scholarship Application Open!

Eligible students at least 10 years old and in the 4th grade or higher are encouraged to apply for a NOAH Space Camp Scholarship! Up to six scholarships will be awarded to attend Space Camp for Interested Visually Impaired Students (SCIVIS) – September 28 to Oct. 4, 2019! Learn more and download the application at www.albinism.org/space-camp/

Posted: April 29th, 2019

Application Deadlines Approaching: Scholarships for Students with Albinism

The 2019 McGowan Leadership Scholarship application deadline for undergraduate students with albinism in the US or Canada is May 1st! Also, the Team See Possibilities – Global Scholarship Program for legally blind undergraduate and graduate students who are residents of the United States or New Zealand has an application due on April 30th. To learn more and apply, please visit www.albinism.org/scholarship

Posted: April 29th, 2019

NOAH Community Member Recognized

NOAH community member, Alexandra Joy Crocco is featured in the New Haven Register article for her journey to become a legally blind, professional photographer. https://www.nhregister.com/news/article/Legally-blind-pro-photographer…

Posted: April 29th, 2019

USABA Emerging Stars ID Camp

Legally blind youth athletes ages 14-18 (best-corrected vision of 20/200 or below) and coaches are invited to apply for the inaugural USABA Emerging Stars ID Camp at the Colorado Springs Olympic Training Center, July 21-25. This camp will provide participants with training sessions in a variety of Paralympic sports at world-class venues. Sports include goalball, track and field, swimming, judo and triathlon. https://www.usaba.org/event/usaba-emerging-stars-id-camp-07-21-2019/ For more information, contact Pam McGonigle at pmcgonigle@usaba.org

Posted: April 29th, 2019

Artistic Albinism Advocacy through Animation!

“We Have Albinism” is a 3D animation project created by 21 year old Jadine Ingram, a young woman with albinism seeking to promote positive representation. Check out the video at http://youtu.be/aXbffapn8Rs

Posted: April 29th, 2019

Adults with Albinism Weekend

We are excited to announce registration is now open for our Adults with Albinism Weekend! Registration is $130 per person which includes Friday dinner, Saturday group outing, and Sunday Continental Breakfast. Register today for a weekend filled with fellowship, fun, and memories to last a lifetime. We hope to see you September 27-29 in Atlanta, Georgia!

Posted: April 15th, 2019

IAAD is June 13th! How will you celebrate?

International Albinism Awareness Day is less than two months away and we want to hear how you will celebrate! NOAH’s IAAD Ambassadors stand ready to help – email iaad@albinism.org for assistance in planning, to share details of your event with the community, or to volunteer to join the team of IAAD Ambassadors. Be sure to check in with https://www.albinism.org/iaad for the latest event listings – and a special shout out to our first listed event – the Northern Illinois NOAH IAAD Picnic in the Park!

Posted: April 15th, 2019

NOAH Board of Directors

NOAH’s Board of Directors plays a crucial role in the work that NOAH does. Members of the board are responsible for governance, serve a four-year term, volunteer on a board standing committee, support efforts to fund NOAH programs, and attend two meetings annually. If you’re interested in changing lives in the albinism community through service on NOAH’s Board of Directors, email info@albinism.orgto learn more. www.albinism.org/board-of-directors/

Posted: April 15th, 2019

Rare Compassion Project

There is an exciting opportunity to share your story with medical students! Apply to be part of the RARE Compassion Project to help foster an understanding of and compassion for rare patients. View the flyer to learn more.

Posted: April 15th, 2019

NOAH Parent Presenting TED Talk

Dr. Niya Pickett Miller, an assistant professor of communication at the historic Tuskegee University and mother of a child with albinism will be presenting a TED Talk during TEDxBirmingham next month! https://www.facebook.com/TEDxBirmingham…

Posted: April 15th, 2019

A model with Albinism on the cover of Vogue

International model, lawyer and activist Thando Hopa is on the cover of the April issue of Vogue Portugal! Thando was also on the cover of NOAH’s Albinism InSight Winter 2014 when we shared here story! You can check it out at https://bit.ly/2OCQrpy

Posted: April 15th, 2019

Michael McGowan Leadership Award – Where are they now?

This week we caught up with 2010 McGowan Leadership Scholarship recipient Silpa Tadavarthy in Philadelphia. Silpa is a student at the Lewis Katz School of Medicine at Temple University. You can learn more about Silpa’s high school activities and what advice she has for future applicants at www.albinism.org/scholarship-silpa/

Posted: April 1, 2019

Hermansky-Pudlak Syndrome Awareness Day

Wear your dots for Hermanskyk-Pudlak Syndrome on April 6th because life is better when we stick together! Why the dots? Blood platelets have little “dots” called dense bodies that release chemicals so they stick together, clotting blood when there is internal or external bleeding. People with HPS lack these dense bodies. Show your support for those living with HPS on April 6th!

Posted: April 1, 2019

Where’s Mike?

This past week, Executive Director Mike McGowan was in San Diego, California representing NOAH at the 2019 American Association for Pediatric Opthalmology and Strabismus (AAPOS) annual meeting. Thank you, Mike, for your tireless efforts in spreading albinism awareness!

Posted: April 1, 2019

Global Scholarship Program

Legally blind students with albinism, check out this new scholarship program open to students pursuing an undergraduate or graduate degree at an accredited college or university! Five scholarships of up to $5,000 each will be rewarded! Learn more at www.teamseepossibilities.com/global-scholarship-program.html

Posted: April 1, 2019

National Library Service for the Blind and Physically Handicapped Survey

The National Library Service for the Blind and Physically Handicapped (NLS) at the Library of Congress is currently conducting an important survey of individuals who are blind or visually impaired, reading disabled (e.g., dyslexia or traumatic brain injury), or physically disabled to gather information about their experiences accessing and using technology. The results of this survey will be used to guide the NLS as they make important decisions about how to best use technology to improve access for their users and potential users. Gallup, working on behalf of the NLS, is currently recruiting individuals to participate in this study. Please complete this short recruitment survey by web at tiny.cc/NLS or by phone at 888-305-6873. This survey is voluntary and should take about 5 minutes to complete.

Posted: April 1, 2019

Reserve Your Room for Adult Weekend at the Group Rate

Adults with albinism, it’s your turn! The room block for NOAH’s Adult Weekend Atlanta, September 27-29, is officially open! Registration is expected to open in early April, but you can reserve your discounted accommodations at the group rate today. www.albinism.org/adult-weekend.

Posted: March 18th, 2019

Register for NOAH Family Summer Camp!

It’s time to register for NOAH Family Summer Camp! Create amazing memories with a classic camping experience in New Hampshire, designed for children with albinism and their siblings (seven and older). www.albinism.org/nh-camp

Posted: March 18th, 2019

Where’s Mike?

This past weekend, we found NOAH executive director Mike McGowan at the HPS Network’s 26th annual conference, “Life is Sweet When We Are Together” in Uniondale, New York. During this amazing weekend for families, physicians and researchers with an interest in Hermansky-Pudlak Syndrome (HPS), Mike caught up with HPS Network Founder and President, and NOAH board member Donna Appell (center), and past NOAH board chair and long-time volunteer, Sheila Adamo (left).

Posted: March 18th, 2019

2019 Rare Impact Award

We are delighted to share that NOAH board member, and HPS Network Founder and President, Donna Appell, has been named a 2019 Rare Impact Award winner by the National Organization for Rare Disorders, Inc. (NORD), in recognition of her outstanding work in support of the rare disease community. Thank you, Donna, for your tireless efforts on behalf of people with Hermansky-Pudlak Syndrome. Such a well-deserved honor! https://rarediseases.org/living-rare-forum/

Posted: March 18th, 2019

International Albinism Awareness Day 2019: Still Standing Strong

Still Standing Strong, the 2019 theme for International Albinism Awareness Day (IAAD), was chosen to recognize, celebrate and encourage strength in persons with albinism. Join NOAH and the albinism community around the world in celebration of IAAD on June 13th and learn more about how regional ambassadors will help create a movement of awareness, recognition, and joy. https://www.albinism.org/iaad

Posted: March 18th, 2019

Take the Low Vision Survey

The National Research and Training Center on Blindness and Low Vision at Mississippi State University is conducting a survey to learn more about the things that influence how a person who is blind or visually impaired keeps working or advances in employment. Adults with albinism are encouraged to share their experiences by participating in this study. https://msstatecoe.co1.qualtrics.com/jfe/form…

Posted: March 18th, 2019

NOAH Family Summer Camp Registration Fees Announced!

Registration fees have been announced for NOAH’s Family Summer Camp, July 13-17, 2019. Create amazing memories with a classic camping experience in New Hampshire, designed for children with albinism and their siblings (seven and older). https://www.albinism.org/nh-camp/ Registration is expected to open in mid-March.

Posted: March 4, 2019

McGowan Scholarship, Where Are They Now?

With the 2019 McGowan Leadership Scholarship Application open, we found ourselves wondering what past recipients have been up to lately – so we asked them! Hear from 2018 recipient, Elizabeth Schafer, and 2016 recipient, Lee-Anne Thompson to learn more about their accomplishments since winning this prestigious NOAH award. If you or someone you know is interested in applying for the 2019 scholarship, visit https://www.albinism.org/leadership/ before the May 1st deadline.

Posted: March 4, 2019

Breaking Scientific News

A small pilot clinical study at the National Eye Institute (NEI) shows Nitisinone increases melanin in some people with albinism. Results suggest the drug could help protect skin and prevent vision problems. https://www.nih.gov/news-events…

Posted: March 4, 2019

Family Health History Survey

The Genetic Alliance is seeking participants to take a brief survey to help them better understand how knowledge of genetic testing, and understanding family health history, can improve health. To participate please use the following link: https://www.surveymonkey.com/r/DLZB7DS.

Posted: March 4, 2019

Connor Codes

Shout out to NOAH teen Connor N, who recently launched an app on Google Play! Three months ago, Connor had an idea to create an app that lets users create code in a variety of programming languages on their mobile phone. Users can create a file of code, selecting which programming language they want to use, then type the code and run it – all on their mobile device! https://play.google.com/store/apps/details…

Posted: February 18, 2019

NOAH at the Illinois AER Conference

Sheila Adamo and Mike McGowan were spreading the NOAH love at the Illinois AER Conference on Valentine’s Day! We love talking with educators about albinism.

Posted: February 18, 2019

The Other Side of Stigma

Rick Guidotti of Positive Exposure and NOAH board member Sonja Harris (around the 12-minute mark) participated in this thought-provoking radio interview, “The Other Side of Stigma”. Have a listen at http://www.wfuv.org/content/other-side-stigma…

Posted: February 18, 2019

Federal Employee Workplace Giving

There’s still time to participate in the Combined Federal Campaign (CFC) – the workplace giving program of the federal government of the United States! 100% of funds donated through the #CFC go directly to NOAH! Please share with family and friends who are federal employees and ask that they consider designating NOAH as the recipient of their workplace giving. We’re easy to locate using our CFC code 10028 or keyword search “NOAH” at https://cfcgiving.opm.gov/offerings, the online pledge portal will remain open until February 22nd.

Posted: February 18, 2019

Michael J. McGowan Leadership Scholarship 2019

2019 Michael J. McGowan Scholarship

NOAH is seeking creative, passionate, focused student leaders to apply for the 2019 McGowan Leadership Scholarship. This $3,000 scholarship award is intended to highlight student leadership and contributions to the albinism community. Students with albinism residing in the US or Canada and enrolled in an undergraduate program at a US or Canadian institution of higher education are eligible to apply. www.albinism.org/leadership.

Posted: February 4, 2019

Grandparent Connections Logo

Grandparent Connections Schedule Released

The 2019 Grandparent Connections schedule has been released! Topics include social aspects of albinism, adapting to the diagnosis of albinism, overview of services from birth through independence, and career panel of adults with albinism. Grandparent Connections provides grandparents of children with albinism a place to connect and share their experiences with one another. View the schedule and join at www.albinism.org/grandparentconnections.

Posted: February 4, 2019

Events Map

Seven States Have Already Sprung into Action!

NOAH’s 14th Annual Bowl-a-thon and Spring Fundraiser season is off to a great start! We are thrilled to already have events scheduled in seven states, and we hope that you’ll join the list! Visitwww.albinism.org/fun to learn how you can be part of the FUN!

Posted: February 4, 2019

adorable NOAH member sports embroidered NOAH hat NOAH Embroidered Gear Sale

Check out the wide assortment of NOAH swag at https://noah.qbstores.com/home. NOAH embroidered gear is currently on sale, up to 30% off with $4.95 flat rate shipping!

Posted: February 4, 2019

Send Us Your Work Photos

As part of our albinism in the workplace feature, Albinism InSight wants pictures of you at work! Send your photos toai@albinism.org, and tell us a little bit about where you work and what your job is!

Pictured: Veterinarian, Dr. Sydney LaRue

Posted: January 21, 2019

New Parent Connections Schedule Released

The new Parent Connections schedule has been released! Upcoming topics include Parents of Young Children with Albinism, Building Resilience, All About Siblings of Children with Albinism, and The Home-School Connection. Learn more or sign up to be part of Parent Connections at www.albinism.org/parent-connections.

Posted: January 21, 2019

Envision Level-Up Program

Envision’s Level-Up Program for Middle and High School students provides week-long training programs for students across the nation, who are blind or visually impaired. The Middle School program, held at Butler Community College, works to develop soft skills and advocacy in addition to technology to promote academic success. The High School Conference, located on the Wichita State University Campus, is designed to prepare students to successfully transition to college or career. Learn more athttps://www.envisionus.com/Level-Up. Teacher referral forms are due by February 12th!

Posted: January 21, 2019

Year-End Match Success!

We’re celebrating NOAH earning the $5,000 year-end gift match! Thanks to all who generously gave. We couldn’t have done it without you.

Posted: January 7, 2019

JVIB, Special Focus on Albinism and Vision

Congratulations to NOAH community member, Kimberly Avila, Ph.D., TVI, COMS for her tremendous work as guest editor of the Special Focus on Albinism and Vision issue of the Journal of Visual Impairment & Blindness (JVIB)! https://www.afb.org/afbpress/newpubjvib.asp?DocID=jvib120601

Posted: January 7, 2019

Rachel Petherbridge, BU’s First Mitchell Scholar

Congratulations Rachel Petherbridge, on being BU’s first Mitchell scholar. As a scholarship recipient, Rachel will spend a year in Ireland studying public policy. www.bu.edu/today/2018/rachel-e-petherbridge-mitchell-scholarship-winner…

Posted: January 7, 2019

Colleen Young, Paralympic Athlete and Fairfield University Swimmer

Paralympic world record holder and Fairfield University swimming standout Colleen Young is in the news. Kudos to Colleen for her perseverance and positive attitude – join us in wishing her continued success in and out of the pool!

Posted: January 7, 2019

Owen D, Space Camp Experience

In this heartfelt video, scholarship recipient Owen D shares what attending Space Camp for Interested Visually Impaired Students (SCIVIS) meant to him!

Posted: December 3, 2018

Breaking Myths About Albinism

Have you seen this “Breaking Myths” documentary created by a group of European albinism organizations? Do aspects of this video resonate with you? If you were interviewed for a video like this, what would your message be?

Posted: December 3, 2018

Facebook Giving Tuesday

Ready, set, give! Please donate NOW and SHARE this post so others can give before the Facebook match runs out! #GivingTuesday

Posted: November 27, 2018

Where’s Mike?

The face of NOAH at professional conferences, this month we find Executive Director Mike McGowan in Orlando, Florida at the 2018 American Academy of Pediatrics Conference! Thank you, Mike, for your tireless efforts in spreading albinism awareness.

Posted: Friday, November 23, 2018

Get to Know Sumner Johnson

Get to know NOAH community member Sumner Johnson, a 4-year Sul Ross Scholarship recipient at Texas A&M who was recently featured in the Texas A&M Foundation’s Spirit Magazine! https://www.txamfoundation.com/Fall-2018/Student-Impact.aspx

Posted: Friday, November 23, 2018

Thank you, Facebook Fundraisers!

Did you know that there have been 89 Facebook Fundraisers benefiting NOAH this year? These Facebook community members raised more than $15,000 through their network of family and friends — AMAZING! Join us in thanking our NOAH Facebook family for their support – you can join in the fundraising fun at https://fb.com/fund/NOAH.Albinism. #thankful #BetterTogether

Posted: Saturday, November 17, 2018

NOAH Earns Through iGive

Did you know that NOAH supporters have earned $3,429.10 for NOAH by shopping through iGive? In the month of November, you can help NOAH earn even more with iGive’s $3.00 new member iGive button bonus! As you begin your holiday shopping, consider shopping through iGive! Learn more at https://www.iGive.com/albinism!

Posted: Monday, November 5, 2018

National Federation for the Blind Scholarship Program

All legally blind high school and college students have the opportunity to apply for one of the many scholarships offered by the National Federation for the Blind. The scholarship program began on November 1st and ends on March 31, 2019. To learn more and apply at www.nfb.org/scholarships

Posted: Monday, November 5, 2018

Through Nov 2, AmazonSmile is donating 5% (ten times the usual amount) to National Organization For Albinism And Hypopigmentation when you shop at smile.amazon.com/ch/23-2265173. #AmazonSmile #StartWithaSmile

Posted: Monday, October 29, 2018

SPOTMYUV Offer

SPOTMYUV

Have you heard of SPOTMYUV? Members of the NOAH community are invited to try SPOTMYUV (www.SPOTMYUV.com), the world’s first UV indicator clinically proven to switch colors as you need to reapply sunscreen, all day long. Receive your first 4-pack for free by using the discount code NOAH at checkout. Rated for 1 day’s use, the sticker changes color to purple with any amount of UVA or UVB, and will reversibly switch back to clear in the sun after sunscreen has been applied.

Posted: Monday, October 22, 2018

Learn more about community member Brandi Darby’s emotional journey to becoming the first legally blind woman to medal at a USA weight lifting competition.

This is a story about tears and the emotions that can be found in each drop.

Posted: Wednesday, October 17, 2018

Space Camp for Interested Visually Impaired Students is in the news!

Congratulations and a big THANK YOU to NOAH Board Member and SCIVIS Coordinator Dan Oates!

https://www.wired.com/story/space-camp-photo-gallery/

Posted: Thursday, October 11, 2018

NOAH Friends Gather Now and Next Fall

NOAH friends Joni and Katrina recently met up for dinner while Katrina was in Wisconsin. We hope to see more smiling faces in Atlanta, Georgia on September 27-19, 2019 as adults with albinism come together for Adult Weekend. Save the Date!