National Ataxia Foundation

NAF Statement on FDA Issuing Complete Response Letter for VYGLXIA (troriluzole) - National Ataxia Foundation Biohaven announced that it has received a Complete Response Letter (CRL) from the U.S. Food and Drug Administration (FDA) for the New Drug Application (NDA) seeking approval of VYGLXIA (troriluzole) R...

NAF will continue working w/ our colleagues at Biohaven, the FDA, policymakers, & the Ataxia community to make sure the patient voice is represented in every stage of this process.

Learn what a CRL is & check out our full statement: www.ataxia.org/naf-statemen... (2/2)

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)

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!

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)

Sign the Petition Urging FDA to Consider Treatment Options for Rare Diseases with Unmet Needs, including SCA

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)

Help Us Urge the FDA to Act on Rare Disease Treatments - National Ataxia Foundation 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 Spin...

Learn more on our website:
www.ataxia.org/help-us-urge... (2/4)

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)

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

Genetics - National Ataxia Foundation Genetics Empower yourself with knowledge about genetic counseling and testing. ABOUT GENETIC TESTING GENETIC COUNSELING & TESTING OPTIONS GENETICS FREQUENTLY ASKED QUESTIONS SCIENCE OF GENETIC TESTING...

You can continue to learn about the genetics behind Ataxia, including information about genetic testing, on our Genetics webpage: Ataxia.org/Genetics (3/3)

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)

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)

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...

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

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.

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...

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

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

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...

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.

Hope your procedure was a success and wishing you a rapid recovery!

YouTube video by National Ataxia Foundation All About DBS | PrepRARE Webinar

We actually have a webinar all about this if you would like to learn more: youtu.be/GmGCE58-iUI

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.