National Ataxia Foundation
@ataxiafoundation.bsky.social
90 followers 21 following 19 posts
Our mission is to accelerate the development of treatments and a cure while working to improve the lives of those living with Ataxia.
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ataxiafoundation.bsky.social
Today is International Ataxia Awareness Day and we need your help to spread the word! Are you ready to make this the biggest #IAAD yet? Kick it off by sharing this graphic to let everyone know what day it is!
ataxiafoundation.bsky.social
Your voice matters. Together, we can amplify the call for change and help bring hope to families living with Ataxia. Thank you for your support and advocacy. (4/4)
ataxiafoundation.bsky.social
Sign the petition directly here: chng.it/g9ctYh2ksQ

*Please note: change.org will prompt you to donate while you are signing the petition. A donation is NOT required to sign. Donations do NOT go to NAF. You can skip that step. (3/4)
Sign the Petition
Urging FDA to Consider Treatment Options for Rare Diseases with Unmet Needs, including SCA
chng.it
ataxiafoundation.bsky.social
Ataxia doesn’t wait—and neither should treatment. NAF has launched a petition on Change.org calling on the FDA to prioritize treatment options for rare diseases with urgent unmet needs, including Spinocerebellar Ataxia (SCA). (1/4)
ataxiafoundation.bsky.social
Today is Friedreich Ataxia Awareness Day to bring awareness to one of the most common forms of recessive hereditary Ataxia. On average, the disease’s onset is in people from ages 5-25.

Learn more about Friedreich Ataxia (FA) on our website: www.Ataxia.org/FA
ataxiafoundation.bsky.social
The first Ataxia gene mutation (responsible for SCA1) was discovered in 1993 by Dr. Huda Yahya Zoghbi & Dr. Harry Orr. Since then, scientists have continued to unlock the genetic secrets of Ataxia as they work toward developing treatments & eventually a cure. (2/3)
ataxiafoundation.bsky.social
April 25th is National DNA Day! It commemorates the 1953 discovery of DNA's Double Helix Structure & the completion of the 2003 Human Genome Project. Our knowledge of DNA has expanded in less than a century but when did researchers start discovering the genes that cause hereditary Ataxias? (1/3)
ataxiafoundation.bsky.social
This Friday! Join us April 11th at 1pm CDT for our “Ask the Expert” webinar with Dr. Susan Perlman to answer your questions about Ataxia. You will have the opportunity to ask any questions you have related to Ataxia.

Register here: us02web.zoom.us/webinar/regi...
ataxiafoundation.bsky.social
We're grateful for the opportunity to put Ataxia at the forefront of the conversation in front of so many industry experts. Looking forward to tomorrow! #AtaxiaAwareness
aniloza.bsky.social
Next week I'll be sitting down with Bill Nye & @ataxiafoundation.bsky.social about research on Ataxia — and the search for better treatments for the disease that has run in his family @statnews.com's #STATBreakthrough event !!!
Featured Session: Bill Nye, Ataxia Advocate Guy. STAT 2025 Breakthrough Summit East. Bill Nye, Science educator. Andrew Rosen, National Ataxia Foundation. Anil Oza, Sharon Begley Fellow, STAT (moderator). New York, Ny. March 20.
ataxiafoundation.bsky.social
The Senate may vote today on a proposed a budget that would cut FY25 funding for the Congressionally Directed Medical Research Program (CDMRP) by 57%. Contact your representatives today to urge them to vote no.

Learn more: rollcall.com/2025/03/13/f...
Fears grow about plan to cut Pentagon medical research fund - Roll Call
The six-month continuing resolution before Congress would cut $1.2 billion from the Pentagon's health research into deadly diseases.
rollcall.com
ataxiafoundation.bsky.social
Did you know? The cerebellum is the part of the brain responsible for movement coordination in the body. Ataxia symptoms occur when the cerebellum is not functioning properly. Cerebellar dysfunction can be caused genetically or by physical injury. #AtaxiaAwareness
ataxiafoundation.bsky.social
Today is #RareDiseaseDay which is meant to bring awareness to rare diseases around the world, including the various types of #Ataxia! How are you championing Rare Disease Day today?

For more information on Rare Disease Day, visit: www.rarediseaseday.org
ataxiafoundation.bsky.social
The survey takes about 17 minutes and closes on January 20. Your responses are confidential and will be analyzed in aggregate. Thank you for helping us make a difference!

Complete the survey: survey.savanta.com?&id=463bfe24...
Survey Intro Page | Survey progress 0% | Savanta Survey
survey.savanta.com
ataxiafoundation.bsky.social
The National Ataxia Foundation is conducting an online survey with help from Savanta. We need your insights. If you’re living with ataxia or caring for someone with ataxia, your feedback can help shape NAF’s future programs.
ataxiafoundation.bsky.social
Hope your procedure was a success and wishing you a rapid recovery!
ataxiafoundation.bsky.social
Thanks for the mention! We'll definitely be on here a bit more in the New Year. Looking forward to building community for those living with Ataxia on this corner of the internet.