Subscribe to Albinism InSight Today!

The Autumn issue of Albinism InSight, featuring the incredible members of the 2020 NOAH Virtual Choir on the cover, has recently been hitting mailboxes and inboxes. We are so excited to share this issue with the NOAH community!

Are you subscribed to NOAH’s quarterly magazine? Don’t miss out – subscribe to Albinism InSight today!

Posted: September, 21, 2020

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Join us for PWA Book Club!

NOAH’s PWA Book Club fall selection is Song of Solomon by Toni Morrison. Now is the perfect time to join with other adults in the community in sharing your love of reading. Sign up today at www.albinism.org/bookclub! Our Zoom discussion will be in late October /early November.

Posted: September 21, 2020

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What I Wish I Knew…

We recently asked adults in the NOAH community to share something they know now about living with albinism, that they wish they knew in their teens or 20s. Countless PWAs shared wonderful advice about self-confidence, asking for help when needed, embracing uniqueness, taking advantage of technology, and much more. Check out the many insightful responses or share your own thoughts on our Facebook post!

Posted: September 21, 2020

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Calling All Teens!

Teens with Albinism, we want to hear your story! Inspire others by telling us about your thoughts, dreams, accomplishments, or concerns. Send your story to teenspotlight@albinism.org

www.albinism.org/teenspotlight/

Posted: September 21, 2020

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And the Next PWA Activity Will Be…

Throwback to the Virtual Paint & Sip session at #VirtualNOAHCon2020! This awesome activity was a big success….can you recommend other activities to bring adults with albinism together? Share your ideas on our Facebook post!

Posted: September, 21, 2020

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Advice from Adults!

As kids are heading back to school, we asked adult PWAs to share their best back-to-school advice. Check out some great suggestions from the NOAH community or add your own advice on our Facebook post!

During back-to-school season, don’t miss our weekly #WelcomeBackWednesday posts to share back-to-school pics, tips, and much more!

Posted: September 9th

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Thank you!

Let’s Celebrate NOAH Facebook Fundraisers!

Do Facebook fundraisers really make a difference? ABSOLUTELY! Since 2018, NOAH has received more than 2,000 donations totaling nearly $74,000 from fundraisers created by our followers! And because Facebook covers the processing fees, NOAH gets every penny donated. If you’d like to join NOAH’s Facebook fundraising team and celebrate a birthday or other special event by raising funds for NOAH, visit www.facebook.com/fund/NOAH.Albinism

Posted: September 9th, 2020

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Other news!

 

Imagine That!

NOAH virtual choir director, Marleena Barber, and choir member, 12-year-old Coco J. were recently part of an exciting project creating a children’s album with award-winning Broadway, film, and television actress and singer Rena Strober. The album, Imagine That!, features the Sesame Street music of Joe Raposo & Jeff Moss, and was released on Friday, August 28th. To learn more about this project, visit the Imagine That! BandCamp Page.

Posted: September 9th, 2020

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Asfixia

Have you heard about the Mexican film,
Asfixia, starring Johana Fragoso Blendl, an actress with albinism? The film will be streaming (with English subtitles) as part of the Hola Mexico Film Festival ​​​​​​​September 11-20.

 

Posted: September 9th, 2020

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NOAH Virtual Choir

We are beyond excited to share the NOAH Virtual Choir’s amazing performance of the song “You Will Be Found” from the Broadway Musical Dear Evan Hansen. Coordinated by Marleena Barber, this video made its world premiere on July 12th, during the closing session of Virtual NOAHCon2020. Special thanks and congratulations to the participants!

Posted: August 24th, 2020

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Summer Fun!

This summer has been different than expected, but people everywhere have found creative ways to enjoy time with friends and family!

In a recent social media post, NOAH asked adults with albinism to share what they’ve been doing for safe, socially distant, summer fun. It turns out, our community has been quite busy enjoying awesome and safe activities! Check out the fun outdoor and virtual activities that have been shared, and let us know what you’ve been up to this summer: Summer Fun Facebook Post

Posted: August 24th, 2020

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#WelcomeBackWednesday

Back to school season has begun and we can’t wait to see your pictures! We know our NOAH kids (and teachers!) are going to back to school at different times (and in different ways), so each Wednesday, we’ll be inviting our social media followers join in on the fun by sharing back to school pics. Do you have an awesome setup for virtual learning? An exciting first day of school outfit? Share your photos on our #WelcomeBackWednesday Post, or tag NOAH in your Instagram or Twitter post!

Posted: August 24th, 2020

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‘Sharing Thoughts About Money’

Parents, we’re pleased to share the full manuscript of Dr. Anne Corn’s article, ‘Sharing Thoughts About Money’, of which an abbreviated version was printed in the Summer edition of Albinism InSight. In it, Dr. Corn explores various aspects of financial literacy and money issues that a parent of a child with albinism might want to consider.

Sharing Thoughts About Money by Dr. Anne Corn

Posted: August 24th,2020

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Other News
FYI – American Foundation for the Blind (AFB) needs YOU for their photos!

AFB wants to show authentic images of real people on their website, social media channels, and other publications. Would you like to be featured? Learn more about submission guidelines and the types of photos needed:

https://www.afb.org/blog/entry/afb-needs-you-our-pictures

Submit your photos by September 8th for a chance to win a $25 Amazon gift card!

Posted: August 24th, 2020

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A Vision Beyond 2020

If you missed #VirtualNOAHCon2020, have no fear! Now you can register for access to the conference platform and recorded content by signing up at https://app.donorview.com/o4ALV

Conference attendees – use your conference login information to access recorded content on the home page. Login just as you did to attend during conference weekend. No need to sign up again!

While you’re reflecting on the conference or catching up on recorded content, we want to hear from you! Do you have a vision for future support forums, interest group meetings, educational sessions or social activities that would benefit the albinism community? Share your ideas today at www.albinism.org/noahcon2020/your-vision

Posted: July 27th, 2020

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PWA Book Club

“All the Light We Cannot See” by Anthony Doerr is the next book being read by NOAH’s PWA Book Club. If you haven’t joined yet, what are you waiting for? Sign up today at http://www.albinism.org/bookclub. Members will discuss the book in late August/early September.
We hope you will join us!

Posted: July 27th, 2020

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Angela’s Send-Off at Family Social Hour!

We hope you’ll join us for a very special Family Social Hour this Tuesday, July 28th at 3pm ET. This call will be a special back to school celebration with your NOAH friends as we thank Angela for being our awesome Family Social Hour host these past four months!

We can’t wait to see your smiling faces!

www.albinism.org/social-distancing-with-friends

Posted: July 27th, 2020

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Announcing: NOAH Family Summer Camp 2021!

Save the (tentative) dates for next summer’s NOAH Family Summer Camp! We’re looking forward to a time when we can come together in person in New Hampshire, July 10-14, 2021. http://www.albinism.org/nh-camp/

Posted: July 27th, 2020

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Looking Back at Virtual NOAHCon2020

 

Sessions and Activities for Everyone!

Over the course of NOAHCon 2020, we had 41 sessions and activities in addition to countless meet-ups in Virtual Albinism Town Square. Community members of all ages joined us from their computers for education, connection, and fun!

Posted: July 19th, 2020

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A Fitting Finale

Our wonderful conference weekend ended with the crowd-favorite Closing Session, featuring a moving performance by the NOAH Virtual Choir. Special thanks to Marleena and Marc Barber for their incredible work on this project!

Post-performance, attendees met one final time in the Virtual Albinism Town Square to reminisce on a wonderful weekend spent “together.”

Posted: July 19th, 2020

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Commemorate the Conference with a T-Shirt!

Looking to commemorate our first ever virtual conference? Purchase a Virtual NOAHCon T-shirt!

NOAH Co-Founder Lee Laughlin has created a t-shirt fundraiser featuring stylish conference tees in many sizes, colors, and styles. Check it out and order yours today! 100% of proceeds benefit NOAH, so you’ll be stylishly supporting a good cause.

www.teespring.com/stores/NOAH2020

Posted: July 19th, 2020

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Announcing NOAHCon2022…and 2024!!

As is NOAH tradition, the venue for the next conference is announced during the Closing Session of NOAHCon. This year’s Closing Session did not dissapoint…and the conference team announced the location for the next TWO conferences, much to the delight of attendees.

The NOAH Team was thrilled to share that NOAHCon 2022 will bring us to Orlando, Florida and NOAHCon 2024 will be the Orange County, California adventure we had been dreaming of for the current conference! Exact conference dates & hotel information will be announced at a later date.

​​​​​​​We can’t wait to see you there!

Posted: July 19th, 2020

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Other News

Back by Popular Demand: Family Social Hour!

We can’t wait to see your smiling faces again this week for Family Social Hour. Join us this Tuesday, July 14th at 3pm ET/12pm PT for fun with the whole family!

www.albinism.org/social-distancing-with-friends/#family

Posted: July, 19th, 2020

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Virtual NOAHCon2020 Update!

 

FREE Conference Registration!

Since registration opened on Wednesday, nearly 400 people have signed up to join us for Virtual NOAHCon2020, and more are registering every day! NOAH is thrilled to be offering free registration for the main conference sessions to make this opportunity for education and connection available to all in our community. Some of our limited-participation sessions are filling up fast, so register today at www.albinism.org/NOAHCon2020 to secure your spot! #AVisionBeyond2020 #VirtualNOAHCon2020​​​​​​​

Posted: June 22nd, 2020

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There’s Something for Everyone!

At Virtual NOAHCon2020, we are excited to offer sessions for a wide variety of our community members. Excited for the conference but not sure what to sign up for? Check our “Sessions by Group” section on the NOAHCon2020 home page for more info on sessions designed with you in mind!

Posted: June 22nd, 2020.

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Sarah’s Picks for Parents!

New Parents & First-time Parent Attendees – not sure what sessions to choose? Check out Parent Liason Sarah’s session recommendations! Sarah’s picks include Latest Research and Ask the Doctors on Friday and Genetics of Albinism for Beginners and How We See! on Saturday.

Check out the full schedule and register today at www.albinism.org/noahcon2020!

Posted: June 22nd, 2020.

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Featured Session: Latest Albinism Research

Friday, July 10th at 8:00 am PT

This session brings together the luminaries in the field of albinism research as they discuss recent developments in albinism research, current projects, and what is in store for the future. ​​​​​​​

Visit www.albinism.org/NOAHCon2020 for the full schedule and register today!

Posted: June 22nd, 2020.

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Other News

 

New This Week: Two Sessions of Family Social Hour!

Due to the growing popularity of our Family Social Hour, we’re separating into two sessions this week (Tuesday, June 23rd). During our regular 3pm ET/ 12:00 pm PT time, we’ll host animal trivia, recommended for ages 7 and under. Then, at 4pm ET/1pm PT, we’ll play Jeopardy, recommended for kids ages 8 and older. We hope to see you there!

www.albinism.org/social-distancing-with-friends/#family

Posted: June 22nd, 2020.

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Support NOAH While You Shop

AmazonSmile is now available on mobile! Open the Amazon app on your mobile device and follow along with our video tutorial to support NOAH every time you shop Amazon!

Video Tutorial: How to Activate AmazonSmile on Your Mobile Device

Posted: June 22nd, 2020.

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IAAD Celebration

Saturday, June 13th was International Albinism Awareness Day, and people with albinism around the globe celebrated and spread awareness in honor of this special day. If you missed it, check out the 2020 International Albinism Awareness Day Online Celebration! https://youtu.be/VmanzdsXpdA #MadeToShine

Posted: June 22nd, 2020.

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Made to Shine!

International Albinism Awareness Day is June 13th! Looking for a way to observe this special day? Check out some of the activities happening, or pick your own unique way to celebrate.

IAAD Virtual Concert
Tune into a virtual concert on Facebook Live featuring NOAH member Marleena Barber, Roben X, Marvin “Krondon” Jones, and countless other talented musicians! This special performance will begin this Saturday, June 13th at 10 AM ET at www.facebook.com/albinismday

IAAD Virtual Happy Hour
Join in on an IAAD Virtual Happy Hour this Saturday, June 13th at 11:30 AM ET at https://bluejeans.com/403411354.

NOAH IAAD Dance Party!
Tired of being online for e-learning, work meetings, and other virtually boring stuff? Show off your best dance moves from the comfort of your own home and join with the albinism community to celebrate International Albinism Awareness Day at a virtual dance party. DJ Chris of NOAH conference Saturday reception fame will host a short set of music to get everyone up and moving. Not much of a dancer? Join anyways to see your NOAH friends.

The dance party starts this Saturday, June 13th at 7PM ET / 4PM PT! Use the link below to join in on the fun:
https://us02web.zoom.us/j/82599732038

Posted: June 8th, 2020

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Shout out to Sophie

Join us in congratulating honorable mention McGowan Leadership Scholarship Award applicant Sophie Ostrove. This fall, Sophie will attend New York University Tisch School of the Arts as a Film and Television major. Check out Sophie’s short film, Lost and Found, which won a special jury prize at the 2020 Emerging Filmmakers Competition at the Montclair Film Festival. https://youtu.be/lsOz5ftau3g

Join us in congratulating honorable mention McGowan Leadership Scholarship Award applicant Sophie Ostrove. This fall, Sophie will attend New York University Tisch School of the Arts as a Film and Television major. Check out Sophie’s short film, Lost and Found, which won a special jury prize at the 2020 Emerging Filmmakers Competition at the Montclair Film Festival. https://youtu.be/lsOz5ftau3g

Posted: June 8th, 2020

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Slytherins and Ravenclaws and Hufflepuffs….oh my!

We can’t wait to see your smiling faces for a special Family Social Hour video call this Tuesday, featuring Harry Potter trivia (witches and wizards from all houses welcome). Join us for show & tell and a fun-filled Harry Potter trivia session with special guest host and longtime NOAH member, Caroline V!

Check out www.albinism.org/social-distancing-with-friends details on how to join in on the fun, and more information about all of our upcoming Social Distancing with Friends calls!

Do you have a story or game to share? Let us know for a chance to be our next special guest host!

Posted: June 8th, 2020

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Last Call for PWA Book Club!

If you’re a person with albinism (PWA) age 18 or older who loves to read, NOAH’s PWA Book Club is for you! Sign up today at www.albinism.org/bookclub #PWABookClub

Posted: June 8th, 2020

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Happy Memorial Day from NOAH!

 

Salute to Seniors

Help NOAH salute our seniors! Send your photo and story to eaubrey@albinism.org, and together, we can celebrate these important milestones! #NOAHSaluteToSeniors

NOAH Salute to Seniors

Posted: May 25th, 2020

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Shoutout to Silpa

Shout out to NOAH member and 2010 McGowan Scholarship recipient Silpa Tadavarthy for her work in helping to set up the Liacouras COVID surge facility in Philadelphia, Pennsylvania. In this photo, Silpa provides instruction on the proper removal of personal protective equipment.

Image courtesy of dvidshub.net

Posted: May 25th, 2020

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Come on and Zoom!

It’s been wonderful to connect each week with our NOAH friends during Social Distancing with Friends video calls! We hope to see your smiling face for one (or more!) of our calls this week:

Family Social Hour (Tuesday 5/26)
Grandparents Social Distancing (Thursday, 5/28)
Social Distancing for Teens (Thursday 5/28)
Young Adults’ Night In! (Thursday 5/28)
PWA Happy Hour! (Friday 5/29).

We hope to see you there!

Posted: May 25th, 2020

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Virtual NOAHCon2020 Update

Be a Part of the NOAHCon2020 Virtual Choir!

The first PWA NOAH Choir made its debut at NOAHCon2018, and received such a positive response, we are bringing back the opportunity to join in song, but this time through a long-distance, “virtual” project. Join the albinism community in creating a special recording and music video of the song “You Will Be Found” from the Broadway Musical Dear Evan Hansen. Coordinated by Marleena Barber, participants will receive practice materials and instructions on how to record their part. All you need to participate is your singing voice, a smartphone and earbuds/headphones! The final product will result in a YouTube video featuring mixed and mastered audio synced to video of the entire “virtual” choir that can be shared worldwide! This program is open to people with albinism ages 12 and up. Sign up today at https://app.donorview.com/R9Lkr. The video submission deadline is Monday, June 8th. #VirtualNOAHCon2020 #PWANOAHChoir

Posted: May 25th, 2020

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Virtual Mother’s Workshop

We are excited to be offering our first ever Virtual Mothers’ Workshop as part of NOAHCon2020. This session will provide information, guidance, and support for mothers of children with albinism of all ages in the comfort of your own home. Facilitated discussions and exercises will create a fun and nurturing environment that encourages mothers to support one another and empower each other to be stronger, healthier, and happier role models for their families.

For more information visit: www.albinism.org/NOAHCon2020/#mothers-workshop

Registration for the Virtual Mother’s Workshop will open in early June.

Posted: May 25th, 2020

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For Your Information…

FYI – COVID-19 Disability Rights Monitor Survey

You’re invited to participate in a survey to inform global advocacies surrounding the challenges persons with disabilities face as a result of the pandemic. To learn more or participate in the survey, visit https://www.covid-drm.org/en/monitor.

Posted: May 25th, 2020

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COVID-19 has changed the world and nothing has been normal for a while now. As we all face uncertainty in many areas of our lives, NOAH wishes you and your loved ones safety and good health. We are all in this together.

 

Staying Connected

We Appreciate You!

Thanks to everyone who has taken the time to participate in our Social Distancing with Friends video calls over the past weeks. It’s uplifting to connect with one another during this time. Special shoutout to our fantastic Social Distancing with Friends volunteer call facilitators, Sheila, Angela, and Aidan, who have been instrumental in providing community members of all ages the ongoing opportunity to connect virtually during this time of social distancing! Finally, our sincere appreciation to NOAH Executive Director, Mike McGowan, for his tireless support of the Social Distancing with Friends series.

Posted: May 11th, 2020

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Fun for the Whole Family!

Our weekly Family Social Hour call has featured tons of fun games and activities for all who attend. Now it’s your turn to pick what we play next!

Do you have a favorite game or activity you’d like to share? Contact Sheila at sadamo@albinism.org with the details for a chance to lead the activity on one of our upcoming calls!

Parents: does the current day and time for Family Social Hour work with your schedule? Would a different time of day be better for you and your family? Please send your feedback to Sheila at sadamo@albinism.org

Posted: May 11th, 2020

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Friendship & Fun Awaits!

Our #SocialDistancingWithFriends calls have been a great way to stay in touch with the albinism community as we continue to socially distance. We’d love to see some new faces on this week’s calls, so don’t forget to invite your friends!!

NEW DAY & TIME!
This week, we have Parents’ Virtual Happy Hour (Friday 5/15)

RETURNING THIS WEEK:
Family Social Hour – #ItsNOAHTime (Tuesday 5/12),
Social Distancing for Teens (Thursday 5/14), Young Adults’ Night In! (Thursday 5/14), and PWA Happy Hour! (Friday 5/15).
We hope to see you there!​​​​​​​

Later this month, we have additional opportunities for grandparents to connect; we hope you’ll join us for Grandparents Social Distancing (Thursday, 5/28).

Posted: May 11th, 2020

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Calling All Parents & Grandparents!

Now is the perfect time to join Parent Connections or Grandparent Connections for an additional way to connect with others who just get it.

Joining Parent or Grandparent Connections will give you access to our closed Facebook groups and informative upcoming calls including Lighthouse Guild Presents: Resilient Families (Monday 5/11). Grandparents will also have access to Albinism and the Eye (Tuesday 5/19) and parents will be invited to join us for A Parent’s Journey (Wednesday 5/27).​​​​​​​

Posted: May 11th, 2020

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Uplifting song

Congratulations, Marleena!

Congratulations to NOAH member and volunteer, the talented Marleena Barber on being featured as a #CAArtsChampion!

Read the story

Posted: May 11th, 2020

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Sartorius Family Shoutout

Shout out to the Sartorius family on being featured in the current issue of Jefferson City Magazine!

​​​​​​​Read their story:
https://jeffersoncitymag.com/chemistry-makes-all-things-possible/

Posted: May 11th, 2020

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For your information

Rare Diseases Are Not Rare! Challenge

Channel your creativity into a submission for the NCATS Rare Diseases Are Not Rare! Challenge, led by the @ORDRNCATS. Help raise awareness about #RareDiseases, the people who have them, and the need for continued research and patient support. The submission deadline for this prize competition is June 15th.

More information

Posted: May 11th, 2020

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Make a Virtual Connection!

If you haven’t joined us for #SocialDistancingWithFriends, check out one of the upcoming opportunities – you won’t regret it! Adults of all ages, families, teens, parents and grandparents, connect with others in the albinism community and share a few smiles! Learn more at http://www.albinism.org/social-distancing-with-friends/

New this week, we have Social Distancing for Teens (Thursday 4/30), hosted by long-time NOAH volunteer Aidan O’Connor.

Returning this week, we have Surviving Social Distancing with Kids – Happy Hour! (Monday 4/27), Family Social Hour – #ItsNOAHTime (Tuesday 4/28), Grandparents Social Distancing (Thursday 4/30), Young Adults’ Night In! (Thursday 4/30), and PWA Happy Hour! (Friday 5/1). We hope to see you there!

Don’t forget to invite your friends!

Posted: April 27th, 2020

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Applications due May 1st!
​​​​​​​
Michael J. McGowan Leadership Scholarship & NOAH’s Junior Advisory Council

Young adults with albinism: Time is running out to work on your McGowan Leadership Scholarship and Junior Advisory Council applications! Applications are due this Friday, May 1st! Learn more at albinism.org/leadership and albinism.org/junior-advisory-council.

Posted: April 27th, 2020

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Uplifting News

NOAH Volunteers Rock!

Countless volunteers help NOAH fulfill its mission everyday, and last week we took a moment to give them a special thanks in celebration of National Volunteer Week. From the Board of Directors, to the Albinism InSight editorial team, event hosts, call hosts, and many others, our awesome volunteers are important and appreciated members of our community! Thank you, NOAH volunteers!!

Posted: April 27th, 2020

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Happy Memories and Honoring an Old Friend!

Last month, NOAH received a generous gift honoring the memory of former board member Margaret Mary Campbell, who passed away in September of 2015.

“Margaret Mary was such a great member of NOAH and her legacy is being carried on by all of you at NOAH. Thank all of you for your wonderful work!”

Thank you, long-time NOAH community members Jim W. and Kathy L. for your generosity and for bringing back warm memories of Margaret Mary!

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Congratulations, Dr. Gabbay!

Join us in congratulating longtime NOAH member, Dr. Bob Gabbay on being named the Chief Scientific & Medical Officer for the American Diabetes Association! https://vimeo.com/405453796

Read the press release at https://www.diabetes.org/…/new-chief-scientific-medical-off….

Posted: April 27th, 2020

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Inspiring Stripes!

Meet April, the inspiration behind K-Deer’s April Stripe signature leggings, named after an inspiring woman and supporting a cause close to her heart! Thank you, K-Deer, for bringing awareness to albinism and donating 5% of e-commerce sales of April stripe to NOAH!
https://www.k-deer.com/blogs/news/april-stripe
#albinismawareness

Posted: April 27th, 2020

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   For Your Information…
Access & Engagement to Education Survey

As family members, guardians, teachers of students with visual impairments (TVIs), or orientation and mobility (O&M) instructors, what are your main concerns during the #COVID19 pandemic? https://www.accessengagement.com/
#Access4BVIStudents

Posted: April 27th, 2020

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Stay Connected with the Albinism Community

 

Social Distancing with Friends!

Have you joined us yet for one of our Social Distancing with Friends video calls? Kids, parents, PWAs, and grandparents have been enjoying coming together virtually while we are social distancing. If you haven’t experienced the connections firsthand, we hope you’ll hop online for one of our upcoming calls!

Coming up this week, we have Family Social Hour – #ItsNOAHTime (Tuesday 4/14), Grandparents Social Distancing (Thursday 4/16), Young Adults’ Night In! (Thursday 4/16), and PWA Happy Hour! (Friday 4/17). We hope to see you there!

Don’t forget to invite your friends!

Posted: April 14th, 2020

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#StayHome Resources

Calling all Parents and Educators!

NOAH’s Parent Connections is pleased to present two upcoming calls on Navigating the Virtual Classroom to support parents and educators of students with albinism as we face school closures due to COVID-19. These calls feature experts answering your pressing questions about the transition to virtual learning.

Parents, please join us on Wednesday, April 15th at 8:00 PM ET. Educators, please join us on Thursday, April 16th at 8:00 PM ET.

Learn more about Navigating the Virtual Classroom for Parents

Learn more about Navigating the Virtual Classroom for Educators

RSVP to sadamo@albinism.org today! Participation instructions will be provided via email.​​​​

Posted: April 14th, 2020

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Resources for the Albinism Community

In an effort to collate information for families and PWA during COVID-19, NOAH has put together two web pages compiling resources shared by community members. To learn more or share resources you’ve found with the community, visit COVID-19 Parent Resources or COVID-19 Information & Resources for PWA.

Posted: April 14th, 2020

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NOAHCon & COVID-19 Update

NOAH 2020 Orange County July 9-12, 2020
Please read our latest update on #NOAHCon2020 and COVID-19 at http://www.albinism.org/covid-19.

Posted: April 14th, 2020

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

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

Posted: April 14th, 2020

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FYI – Free Webinar “Let’s Talk Nondriving and Low Vision Driving for Teens and People in Their Early 20s

Join Dr. Penny Rosenblum, American Foundation for the Blind, with Dr. Anne Corn joining for Q&A April 14th from 5:00 – 7:00 PM EST.

Sign up today!

For more information, please contact Dr. L. Penny Rosenblum at prosenblum@afb.org or 202-469-6837

Posted: April 14th, 2020

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Social Distancing with the Albinism Community

 

Share Your Talents

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

PWA Choir at #NOAHCon2018

Posted: March 30th, 2020

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Calling All Parents & Grandparents!

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

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

Posted: March 30th, 2020

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Youth Opportunities

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

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

Posted: March 30th, 2020

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#StayHome Resources

Special Education Services Guidelines

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

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

Posted: March 30th, 2020

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Freedom Scientific Offers Free Software!

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

Posted: March 30th, 2020

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#NOAHCon2020 Early Deadline Extended

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

Posted: March 30th, 2020

 

Spring for NOAH Events

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

Posted: March 16th, 2020

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Youth Opportunities

 

Michael J. McGowan Leadership Scholarship

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

Posted: March 16th, 2020

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Reminder: Apply for NOAH’s Junior Advisory Council

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

Posted: March 16th, 2020

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Team See Possibilities’ Global Scholars Program

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

Posted: March 16th, 2020

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15th Annual Winter Burn Bowl-a-thon

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

Posted: February 17th, 2020

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Why do YOU Heart NOAHCon?

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

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Bianca McEvoy in the News

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

Posted: February 17th, 2020

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We’re Here to Help!
Event Planning Teleconference

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

 

Twin City Connections

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

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

Posted: February 3rd, 2020

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

Posted: February 3rd, 2020

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NOAHCon2020
Registration Fees Announced

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

Posted: February 3rd, 2020

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Figuring Out Conference Funding

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

Posted: February 3rd, 2020

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Why do YOU Heart NOAHCon?

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

Posted: February 3rd, 2020

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2020 Michael J. McGowan Leadership Scholarship

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

Posted: February 3rd, 2020

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It’s Time to Spring for NOAH

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

Posted: January 20th, 2020

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Albinism Insight Submission Deadline

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

Posted: January 20th, 2020

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Congratulations Donte’ Mickens!

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

Posted: January 20th, 2020

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Eye Fatigue

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

Posted: January 20th, 2020

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Happy New Year!

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

Posted: January 6th, 2019

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Two New Teens in NOAH’s Teen Spotlight

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

Posted: January 6th, 2019

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Parent Connections Schedule

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

Posted: January 6th, 2019

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Albinism Insight

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

Posted: January 6th, 2019

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Kudos to Caroline

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

Posted: December 23rd, 2019

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Thank You Parent Liaisons

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

Posted: December 23rd, 2019

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Celebration of Persons with Albinism on UN Human Rights Day

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

Posted: December 23rd, 2019

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USABA Winter Events

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

Posted: December 23rd, 2019

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Dallas Cowboys Cheerleader Raises Albinism Awareness

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

Posted: December 23rd, 2019

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Scholarship Opportunity

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

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

Posted: December 23rd, 2019

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Volunteer as a New App Tester

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

Posted: December 23rd, 2019

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Giving Tuesday

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

Posted: December 11th, 2019

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Congratulations Sueanna

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

Posted: December 11th, 2019

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Navigating Winter Weather

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

Posted: December 11th, 2019

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Crandall University Research Study

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

Posted: December 11th, 2019

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Happy Thanksgiving!

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

 

Posted: November 25th, 2019

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NOAHCon2020 Theme

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

Posted: November 25th, 2019

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Join the Albinism InSight Team

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

Posted: November 25th, 2019

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Holiday Gift Ideas

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

Posted: November 25th, 2019

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Positive Portrayal and Self Acceptance

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

Posted: November 25th, 2019

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Change the Way the World Sees Albinism

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

Posted: November 25th, 2019

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NOAH in Orange County

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

Posted: November 11th, 2019

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Bites with the Board

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

Posted: November 11th, 2019

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

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

Posted: November 11th, 2019

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There’s No Place Like Home for the Holidays

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

Posted: November 11th, 2019

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Learn About Ocular Albinism with Lincoln!

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

Posted: November 11th, 2019

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Participants Needed in Bioptic Driving Research Study

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

Posted: November 11th, 2019

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Where’s Mike?

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

Posted: October 28th, 2019

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37 Years of NOAH

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

Posted: October 28th, 2019

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Low Vision Trick or Treating Tips & Tricks

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

Posted: October 28th, 2019

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NOAH Parent Appreciation

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

Posted: October 28th, 2019

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Parent and Grandparent Connections Upcoming Calls

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

Posted: October 28th, 2019

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Albinism & Entertainment
​

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

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Parent Liaison of the Year

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

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

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Dr. Niya PIcket Miller Ted Talk

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

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Accessibility Features

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

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Countdown to NOAHCon 2020

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

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You Can’t Be Serious!

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

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Tell Your Teacher!

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

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Beyond Black and White

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

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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.

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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/

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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.

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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!

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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!

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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.

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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.

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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 (http://www.albinism.org/noah-schoolkit-care-project-and-connection-programs/).

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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

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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!

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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 http://www.albinism.org/adult-weekend/#details

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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.

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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.

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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!

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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.

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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.

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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

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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

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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

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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

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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

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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 http://www.albinism.org/albinism-insight-subscription/.

Posted: July 8th, 2019

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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

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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

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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

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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

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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

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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

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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

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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

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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

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Posted: June 10th, 2019

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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

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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 http://www.albinism.org/teen-spotlight-sarah-k/.

Posted: June 10th, 2019

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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 http://www.albinism.org/NH-CAMP

Posted: June 10th, 2019

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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

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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

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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

 

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

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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

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

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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

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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

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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

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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

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“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 http://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

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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

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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

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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

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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

 

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

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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

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Posted: April 1, 2019

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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

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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

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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

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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

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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. http://www.albinism.org/iaad

Posted: March 18th, 2019

Posted: March 18th, 2019

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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). http://www.albinism.org/nh-camp/ Registration is expected to open in mid-March.

Posted: March 4, 2019

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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 http://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

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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

Posted: February 18, 2019

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Pictured: Veterinarian, Dr. Sydney LaRue

Posted: January 21, 2019

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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