The only way to achieve the impossible is to believe it is possible.

Please Join Us!
Ellie's Quest for a Cure Birthday Bash and 5K Walk / Run!
Sunday, September 13th, 2026 1-4p

Kindly RSVP to beth@elliewhitefoundation.org

 

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The Ellie's Quest for a Cure Birthday Bash 5K Fun Run 2025 was a huge success!
Not only did we obtain the $5000 matching donation, together we raised nearly $20,000!
100% of these donations directly fund research.

"Thank you so much for your help - I can't do this alone!" Hope to see you next year!

If you didn't get a chance to donate its not too late!
Please see links at bottom of page.
 

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A presentation: What is Wolfram Syndrome? (10/31/2023)
Wolfram_Syndrome.pptx (10MB)

JUICEBOX Podcast: Ellie White - Learn how Wolfram Syndrome and
Type 1 Diabetes are connected
https://www.juiceboxpodcast.com/episodes/jbp1026 (9/25/2023)

Rocky Mountain PBS - Colorado Voices: Ellie White
https://youtu.be/XejfWrqgLO8 (4/27/2023)

Rocky Mountain PBS - Blogs: Ellie White
https://www.rmpbs.org/blogs/rocky-mountain-pbs/ellie-white-wolfram-syndrome/ (4/27/2023)

Rocky Mountain PBS - Blogs: Dr. Fumihiko Urano
https://www.rmpbs.org/blogs/rocky-mountain-pbs/dr-fumihiko-urano-wolfram-syndrome/ (4/25/2023)
 

MSU Denver Blind/Low-vision STEM Workshop
https://red.msudenver.edu/2023/kids-and-adults-who-are-blind-and-low-vision-get-hands-on-stem-training/ (4/22/2023)

 

Raising Awareness And Living Life: Ellie White
https://www.ccaurora.edu/news-events/campus-happenings/Raising-Awareness-and-Living-Life (11/2022)

DailyMail article - The inspiring courage of Ellie
https://www.dailymail.co.uk/news/article-2175942/Little-Ellie-10-embracing-life-shes-losing-sight-hearing-incurable-rare-disease-months.html (7/19/2022)

Read/Watch Ellie on PBS - No Barriers USA Summit in Estes Park, YMCA of the Rockies
Audio Info Network of CO - "Audio Trekkers" Team 8/28/2022
https://www.rmpbs.org/blogs/rocky-mountain-pbs/hikers-who-are-visually-impaired-focus-on-whats-possible/ (9/12/2022)

Erik Weihenmayer - No Barriers - website/blog/newsletter
https://erikweihenmayer.com/2022/09/14/2022-no-barriers-summit-whats-your-everest-adaptive-hike-recap/

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Watch Ellie skydive - "Don't let anything stand in your way!"
https://www.youtube.com/watch?v=F26gPt2AYfE (8/8/2022)
 

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Listen to Ellie's interview - Aftersight podcast with Penn Street
Audio Info Network of CO - https://aincolorado.org

Aftersight - Ep. 28: "Ellie White - Live to the Fullest"
https://tunein.com/podcasts/p1527581/?topicid=171701610 (4/27/2022)

Also available on Apple Podcasts and Spotify and other podcast sources.

 

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See Ellie's interview @ Overcoming the Odds | Aurora TV (8/5/2021)

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A documentary feature by Jocelyn Leroux Light in the Shadows (10/9/2012)

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Welcome to the Ellie White Foundation For Rare Genetic Disorders

Meet Ellie White . She is far wiser than her years may lead you to believe. Ellie is a beacon of hope. She strives to help raise awareness for her terminal disease, Wolfram Syndrome. Wolfram Syndrome causes blindness, hearing loss, and eventually it affects the brain stem, causing respiratory failure at an early age. With no current cure, the life expectancy of a patient is typically less than 30 years.

Learn more about Ellie and how you can help her find a cure.