Ellie's Quest for a Cure Birthday Bash and 5K Walk / Run!
  Sunday, September 22nd, 2024 1-4p
Let's continue spreading awareness to win this fight!

 


Thank you for your support with Ellie's Quest for a Cure 5K Fun Run on Oct. 1st, 2023, on the third annual Wolfam Syndrome Global Awareness Day! It was a huge success and together we raised more than $15,000! 100% of these donations go toward research.
"Thank you for your help - I can't do this alone!" Hope to see you next year!

 


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/


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


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.
 


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




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 .

 

August 5, 2021 - See Ellie's interview @ Overcoming the Odds | Aurora TV

Donate
The Ellie White Foundation is a 501(c)(3) public charity and so the full amount of any contribution you make will be deductible for federal income tax purposes.
Get Involved
A: P.O. Box 461754 Aurora, CO 80046
P: (303) 598-7633
For more information about how you can help please submit the form below:
Please read our Privacy Policy to see how we use your personal information.

Follow Our Journey

© 2023 Ellie White Foundation For Rare Genetic Disorders
Terms Privacy