NOAH News Today
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/
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
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/
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/#
IAAD Proclamation
Requesting a Proclamation/Resolution/
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/
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/
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-
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.
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/
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/
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
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
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/
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.
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-
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/
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-
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/
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/
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/
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/
Posted: February 18, 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 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/
Posted: February 4, 2019
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
NOAH Embroidered Gear Sale
Check out the wide assortment of NOAH swag at https://noah.qbstores.com/home
Posted: February 4, 2019
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-
Posted: January 21, 2019
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/
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
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! Posted: Monday, October 8, 2018
Northern 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
Space Camp Scrapbook
Posted: Monday, October 8, 2018
Autumn 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
Federal Employee Workplace Giving
Posted: Monday, October 8, 2018
100th 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
Get 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
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
Congratulations 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
Community 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 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 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
Congratulations to NOAH Space Camp Scholarship Winners
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
Spring Fundraiser Inspiration
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!
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