SCA27b Ataxia Foundation

03/14/2026

You don’t have to be in Orlando to experience the 2026 Annual Ataxia Conference.

Join us virtually to watch the General Sessions live, hear the latest research updates, and connect with the community in the Virtual Vibe Hub chat on Friday and Saturday.

🎓 Virtual scholarships are available and cover the full cost of registration ($50 value). Applications close March 20.

Apply or learn more: 🔗 ataxia.org/2026aac

03/07/2026

The NAF Ataxia Brain Tissue Donation Program has relaunched in partnership with the University of Maryland Brain and Tissue Bank, part of the NIH NeuroBioBank.

Brain donation helps researchers better understand Ataxia and move treatment development forward. Participation is open to anyone in the continental U.S. with a clinical Ataxia diagnosis, and there is no cost to register.

To learn more or sign up, visit www.ataxia.org/braindonation. Our team is here to help guide you through the process.

03/04/2026

Our next SCA27B Zoom discussion meeting will be on Monday, March 9, 4:00-6:00 EDT (US/Canada). If you are not already a member and would like to attend this meeting, please fill out the membership form (it's free) at sca27b.org to be added to our email list and to receive invites to our Zoom meetings.

02/28/2026

You can view Dr Schmahmann's testimony on Capitol Hill to reopen Biohaven's extended access program & clinical trial for Troriluzole in SCAs.

https://www.facebook.com/share/v/178LkKp5ZT/

02/26/2026

Representing SCA27B in Nashville for Rare Disease Day/Week.

02/26/2026

Join us next week for All About Genetic Counseling to learn how genetic counseling can help you navigate next steps with clarity and confidence. Whether you’re considering testing, reviewing past results, or looking for guidance beyond genetics alone, this webinar can help.

Register now: https://www.ataxia.org/webinars/

02/24/2026

Promising news for the SCA27B community.
Solaxa Inc. has announced a global licensing agreement with Alvogen to advance SLX-100, an investigational therapy for Spinocerebellar Ataxia Type 27B (SCA27B). This partnership supports continued clinical development and potential worldwide availability of a targeted treatment.

While research is still ongoing, collaborations like this represent important momentum toward expanding treatment options for people living with Ataxia.

Learn more about the announcement here: https://www.ataxia.org/pharmanews/

02/06/2026

A little about FGF14 and its involvement in SCA27B. Do not worry about references to cognition in the attached article. In SCA27B, only one isoform (b) of FGF14 is affected. FGF14b is essential for the coordinated firing of Purkinje cells/neurons in the cerebellum and is closely associated with voltage-gated sodium ion channels in the brain.

FGF14 or fibroblast growth factor 14 is an essential protein found predominantly in the brain, specifically in Purkinje cells. These brain cells are responsible for maintaining everyday functions such as Read More...

01/23/2026

Most forms of Ataxia stem from dysfunction in the cerebellum, but damage to the vestibular system can also cause ataxia. In this webinar, cohosted with VEDA, we’ll explore what the vestibular system does, how it works, and the symptoms associated with vestibular impairment.

Register here: https://us02web.zoom.us/webinar/register/WN_QLtYSYUNTdySO7FeaJhs5g

01/10/2026

February 2nd is the last day for discounted registration for 2026 AAC! Register today and get $50 off to join us in Orlando this April 9-11th!

You can register here: www.ataxia.org/2026AAC

01/08/2026

Our next SCA27B discussion group meeting is scheduled for 4:00-6:00 EST (US/Canada) on FEB 3. If you would like to receive the link to the Zoom link, please sign up for membership at sca27b.org, or email us at sca27b@gmail.com

Dr. Jeremy Schmahmann from Mass General/Harvard will be joining us in the first hour to discuss and answer questions about cerebellar function, symptoms, medical/medication management, eye movement irregularities, etc. in SCA27B. Dr. Schmahmann is a highly experienced ataxia neurologist... we are extremely fortunate that he will be taking this time to share his expertise with us.

If you cannot make the Zoom meeting, I will record it and send out the recording and summary notes via email to members of sca27b.org

Send a message to learn more