NOAH News Today

 

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 hatNOAH 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


Veterinarian, Dr. Sydney LaRue

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


NOAH's Parent Connections

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 Participant
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


Thank You from NOAHYear-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 VisionJVIB, 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


RachelP_Mitchell ScholarRachel 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


ColleenYColleen 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

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!

Facebook Fundraisers for NOAH

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

iGive.comDid 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

National Federation of the BlindAll 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 FriendshipsNOAH 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! 

Posted: Monday, October 8, 2018


 

NI Candlelight BallNorthern Illinois Candlelight Ball

Midwest friends of NOAH, you are all cordially invited to attend The Northern Illinois NOAH’s 2018 Fundraiser Candlelight Ball! The event is Friday, November 9th from 7pm-11pm at Victoria of Rosemont in Rosemont, IL. More details and how you can purchase your tickets can be found at www.albinism.org/gala

 

Posted: Monday, October 8, 2018

 

 
 

SCIVIS_6Space Camp Scrapbook

Campers have returned from 2018 SCIVIS: September 29 – October 4, 2018 and by all reports,it was an amazing experience! Check out the growing scrapbook at  https://www.albinism.org/space-camp/

Posted: Monday, October 8, 2018

 

 
 

NOAH Ed U Autumn 2018Autumn 2018 NOAH Ed U Is Available

The autumn edition of NOAH Ed U is now available! NOAH Ed U is a complimentary electronic supplement, geared toward educators, based on NOAH’s quarterly magazine. Share this publication with educators who work with children with Albinism at www.albinism.org/ed-u

Posted: Monday, October 8, 2018


 

CFC 2018Federal Employee Workplace Giving

Did you know that NOAH is an approved charity of 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.

Posted: Monday, October 8, 2018


 

NOAH Autumn 2018 AI Cover - 100th100th Issue of Albinism InSight

The 100th issue of Albinism InSight is now available! Haven’t received your copy? There’s still time to subscribe or renew your subscription at www.albinism.org/albinism-insight-subscription or order an individual copy at https://www.albinism.org/online-store/

Posted: Monday, September 24, 2018


National Blind Sports Day 2018Get Up and Get Moving!

National Blind Sports Day – October 6, 2018

The United States Association of Blind Athletes’ (USABA) vision is for every American who is blind or visually impaired to lead a healthy lifestyle by actively participating in sports, recreation and physical activity. The goal of National Blind Sports Day is to provide Americans who are blind and visually impaired with opportunities to participate in a variety of sports and physical activities, and to raise awareness of blind sports in our society. National Blind Sports Day will take place during Blindness Awareness Month and a week before World Sight Day (October 11) and White Cane Day (October 15).

NOAH is a proud supporter of National Blind Sports Day.

Check out the list of Blind Sport Day events.

To set up an event of your own, contact Pam McGonigle at pmcgonigle@usaba.org

Posted: Monday, September 10, 2018


Doctors with Albinism

Introducing “Doctors with Albinism”

The newly formed Doctors with Albinism is a group of physicians and prospective physicians with albinism, providing a forum to connect, ask questions, and support each other through the rigorous and rewarding process of becoming a doctor and practicing medicine as a person with albinism. If you are a physician or medical student with albinism or an adult, college student, or high school student with albinism interested in pursuing medicine, please reach out to the group at DoctorsWithAlbinism@gmail.com or check out their Facebook group at www.doctorswithalbinism.org.

Posted: Monday, September 10, 2018


Parent Liaison of the Year 2018Congratulations NOAH Parent Liaison of the Year

Congratulations to Regan Gentile for being named NOAH’s Parent Liaison of the Year. Thank you, Regan, for your dedicated and compassionate support of parents of newly diagnosed children with albinism.

Posted: Monday, August 27, 2018


Ashley HicksCommunity Member Receives 2018 NBC Universal Tony Coelho Media Scholarship

Join us in congratulating Ashley Hicks on receiving a 2018 NBC Universal Tony Coelho Media Scholarship. Ashley will be pursuing her MFA in performance at The American Conservatory Theater this fall. www.aapd.com/press-releases/announcing-the-recipients-of-the-2018-nbcuniversal-tony-coelho-media-scholarship/

Posted: Monday, August 27, 2018


Welcome New Board Members

Welcome New NOAH Board Members

NOAH is excited to welcome Brandi Darby of Pittsburgh, PA and Torey Alford of Denver, CO as our newest board members. Brandi and Torey were each appointed to two-year terms on NOAH’s Board of Directors.

Posted: Wednesday, August 13, 2018


2018 Award Recipients2018 Award Recipients

Last month in Kansas City, NOAH honored seven amazing members with prestigious awards! Please join us in recognizing; Founders’ Award recipients Tim Laughlin, Michelle O’Connor, and Sheila Adamo; Distinguished Service Award recipients Ed Dalton and Debbie Kitchin; Carl Witkop Award recipient Dr. Gail Summers; and 2018 Michael J. McGowan Leadership Scholarship Award recipient Elizabeth Schafer.

Posted: Wednesday, August 13, 2018


2018 Space Camp Scholarship Winners

Congratulations to NOAH Space Camp Scholarship Winners

Congratulations to this year’s NOAH Space Camp for Interested Visually Impaired Students (SCIVIS) Scholarship Winners: Gabriel M., John T., Leah S., Lilith H., Nicholas W. and Owen D.!
 
 
 

Posted: Wednesday, August 13, 2018


NOAH Board Member Makes History at USA Weightlifting Competition

Brandi Darby a Pittsburgh native and NOAH Board Member made history at USA Weightlifting’s American Open Series 2 in Valley Forge, PA. Read the full story to hear how Brandi won a silver and two bronze medals becoming the first in recent history as a legally blind lifter to win at a national level.

Posted: Wednesday, August 8, 2018


Confronted with Her Daughter’s Disease, She Dedicated Her Career to Finding a Cure

Her focus and dedication to find a cure and to support the many diagnosed with HPS led NOAH Board Member Donna Appell on a path to creating the HPS Network. Read the full story as Donna shares her journey following her daughter’s diagnoses of HPS.

Posted: Wednesday, August 8, 2018


NOAH Member on the Cover of the Detroit Free Press 

NOAH member Ryan Huizdos made the cover of the Detroit Free Press in celebration of his family’s successful three-year advocacy effort to allow the use of a yellow baseball in Little League tournament play. Read the full story to learn how Ryan and his family were able to successfully advocate for Ryan’s needs.

Posted: Wednesday, May 7, 2018


Fundraising_2018 NOAH FUNDRAISERS graphic for packet reverseSpring Fundraiser Inspiration

Looking for inspiration for planning a Spring Fundraiser that’s NOT a bowl-a-thon? Check out Julie’s video to learn how the Bluegrass Blondies are moving away from a bowl-a-thon to a fun spring event! Find other inspiring videos and event resources at www.albinism.org/fundraising-resources.
 

Posted: Monday, February 12, 2018


Is Your Clinical Low Vision Specialist Listed?

The Directory of Pediatric Low Vision Service Providers lists, by state, those ophthalmologists and optometrists who are able to provide clinical low vision evaluations for children in the U.S. and Canada. The Directory may be found at http://www.tsbvi.edu/lowvisionservices. If your provider is missing, please contact Dr. Corn at Anne123C@gmail.com and provide the missing provider’s name and state.

Posted: Monday, February 12, 2018


New Year New NOAH 5 Things to KnowNew Year, New NOAH!

It’s a new year and a new NOAH. Read more… 5 Things to Know about the New NOAH in 2018.

Posted: Wednesday, January 31, 2018