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 https://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
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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 https://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 (https://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 https://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 https://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 https://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 https://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 https://www.albinism.org/iaad for the latest event listings – and a special shout out to our first listed event – the Northern Illinois NOAH IAAD Picnic in the Park!

Posted: April 15th, 2019

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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. https://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). https://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 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

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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