NOAH News Today

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