NOAH News Today
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