National Ataxia Foundation
@ataxiafoundation.bsky.social
Our mission is to accelerate the development of treatments and a cure while working to improve the lives of those living with Ataxia.
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)
Learn what a CRL is & check out our full statement: www.ataxia.org/naf-statemen... (2/2)
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...
www.ataxia.org
November 6, 2025 at 12:03 AM
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)
Learn what a CRL is & check out our full statement: www.ataxia.org/naf-statemen... (2/2)
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)
May 31, 2025 at 5:26 PM
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 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)
*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
May 31, 2025 at 5:26 PM
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)
*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)
Learn more on our website:
www.ataxia.org/help-us-urge... (2/4)
www.ataxia.org/help-us-urge... (2/4)
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...
www.ataxia.org
May 31, 2025 at 5:26 PM
Learn more on our website:
www.ataxia.org/help-us-urge... (2/4)
www.ataxia.org/help-us-urge... (2/4)
You can continue to learn about the genetics behind Ataxia, including information about genetic testing, on our Genetics webpage: Ataxia.org/Genetics (3/3)
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...
Ataxia.org
April 26, 2025 at 2:10 AM
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 26, 2025 at 2:10 AM
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)
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...
Complete the survey: survey.savanta.com?&id=463bfe24...
Survey Intro Page | Survey progress 0% | Savanta Survey
survey.savanta.com
January 17, 2025 at 7:08 PM
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...
Complete the survey: survey.savanta.com?&id=463bfe24...
Hope your procedure was a success and wishing you a rapid recovery!
January 16, 2025 at 4:38 PM
Hope your procedure was a success and wishing you a rapid recovery!
We actually have a webinar all about this if you would like to learn more: youtu.be/GmGCE58-iUI
All About DBS | PrepRARE Webinar
YouTube video by National Ataxia Foundation
youtu.be
January 16, 2025 at 4:38 PM
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.
December 20, 2024 at 10:53 PM
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.