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National Ataxia Foundation @ataxiafoundation.bsky.social · 19/03/2026

Today is CACNA1A Awareness Day which was introduced in 2020! March 19th was chosen because the CACNA1A gene is located on Chromosome 19. Various types of Ataxia are caused by different mutations on the CACNA1A gene such as Spinocerebellar Ataxia type 6 (SCA6) and Episodic Ataxia type 2 (EA2). [1/3]

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Reposted by National Ataxia Foundation

Daniel S. Levine @dslevine.bsky.social · 14/11/2025

Andrew Rosen @ataxiafoundation.bsky.social, discusses the critical role of patient-led organizations in early-stage research and advocacy, and the recent surge of therapeutic activity targeting these neurodegenerative conditions. @globalgenes.bsky.social #RARECast globalgenes.org/raredaily/ch...

globalgenes.org

Changing a Treatment Landscape by De-Risking Drug Development

Andrew Rosen, CEO of the National Ataxia Foundation, discusses the challenges of developing therapies for spinocerebellar ataxia, the critical role of patient-led organizations in early-stage research...

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National Ataxia Foundation @ataxiafoundation.bsky.social · 06/11/2025

Biohaven announced that the FDA has issued a Complete Response Letter (CRL) for the New Drug Application of VYGLXIA (troriluzole), intended for the treatment of Spinocerebellar Ataxia (SCA). We're very disappointed in this decision. (1/2)

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National Ataxia Foundation @ataxiafoundation.bsky.social · 25/09/2025

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!

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National Ataxia Foundation @ataxiafoundation.bsky.social · 31/05/2025

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)

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National Ataxia Foundation @ataxiafoundation.bsky.social · 18/05/2025

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

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National Ataxia Foundation @ataxiafoundation.bsky.social · 26/04/2025

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)

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National Ataxia Foundation @ataxiafoundation.bsky.social · 09/04/2025

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...

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National Ataxia Foundation @ataxiafoundation.bsky.social · 19/03/2025

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

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National Ataxia Foundation @ataxiafoundation.bsky.social · 14/03/2025

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...

rollcall.com

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.

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National Ataxia Foundation @ataxiafoundation.bsky.social · 13/03/2025

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

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National Ataxia Foundation @ataxiafoundation.bsky.social · 28/02/2025

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

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National Ataxia Foundation @ataxiafoundation.bsky.social · 17/01/2025

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.

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