SCA27b Ataxia Foundation

09/29/2025

Every year our community comes together to learn, connect, and drive progress at the Annual Ataxia Conference (AAC). To ensure everyone has the chance to be part of this experience, Travel Grants and Virtual Scholarships are available to support participation in Orlando.

Travel Grants for in-person attendees includes complimentary conference registration ($300 value) and up to $1000 in travel support (provided at check-in)
Preference will be given to first-time attendees so apply by 12/3/25!
Virtual Scholarships for online attendees includes complimentary virtual registration ($50 value) and the deadline is 3/20/25!

Apply at www.Ataxia.org/2026AAC

09/27/2025

Our next Zoom discussion meeting will be on WED, OCT 22, 4-6:00 EDT (US/Canada). If you are not on our email list, and would like to join this meeting, please email us at sca27b@gmail.com to request the Zoom link.

Researchers from the University of Chicago will be joining us to discuss the preliminary results from their study on the effect of lifestyle/environment on the age of onset and progression of symptoms in SCA27B.

This should be a great meeting ... looking forward to seeing you there!!

Send a message to learn more

09/21/2025

Join NAF this month on Thursday, 9/25/25 at 9 AM Central, for a webinar about NAF's Ataxia Centers of Excellence (ACE) program. NAF's Clinical Services Director Kelsey Trace will share the impact ACEs are having across the community with the help of Dr. Sharan Srinivisan, co-director of the University of Michigan ACE.

Register here: https://us02web.zoom.us/webinar/register/3017259933474/WN_Yx7vT7zFQW-jWpt6huIiEw

09/06/2025

Our next SCA27B Zoom meeting will be on WED, SEP 10, 4-6:00 EDT (US/Canada). If you did not receive a Zoom invite and would like to join us, please email sca27b@gmail.com to request the link.

Send a message to learn more

08/26/2025

For those of you living in the Phoenix area - Molly Lawson will lead the Arizona ataxia support group on September 6 at two pm at Ability 360 ( https://ability360.org/ ). This support group is not specific to SCA27B, but it will give you a chance for an in-person meeting with other people with ataxia utilizing neurologists in the area.

Ability360 continues a 35-year tradition offering and promoting programs to empower people with all disabilities to take personal responsibility so that they may achieve or continue independent lifestyles within the community. The independent living philosophy states that people with disabilities sh...

08/26/2025

A new study is collecting opinions about gene therapy research from people diagnosed with a genetic Ataxia.

Learn more about the study here: https://www.ataxia.org/study/ataxia-gene-therapy-survey/

08/23/2025

Join us Wednesday, September 10th at 1pm CDT, for our “Ask the Expert” webinar with Dr. Susan Perlman to answer your questions about Ataxia. This is an informal discussion-style webinar without a set topic. Closed captioning is available. You will have the opportunity to ask any questions you have related to Ataxia. Don’t have a question? Join us to listen in!

Register here:https://us02web.zoom.us/webinar/register/3517331681183/WN_vjPMuWgoTBab0LKU67kMGQ

08/14/2025

Join us next month, August 20th at 12 pm CDT, for our Chair Yoga Webinar with . This is a great opportunity to learn some low impact, mobility-friendly exercises that you can do from the comfort of your chair.

Register here: https://us02web.zoom.us/webinar/register/4617331694348/WN_jgXdgp0vQ5G2CPfrE3MWhg

08/14/2025

Living with a chronic illness can feel like living with infinite loss and can lead to persistent feelings of grief. How do we walk through such difficulty and still hold on to hope? Our webinar "Living with Loss: Navigating Grief in Chronic Illness" is now available for rewatch to help you through this question.

A special thanks to the Huntington's Disease Society of America for their help with organizing this webinar.

You can check out the full video on our YouTube channel here: https://youtu.be/Sn0yIY35WrE

08/03/2025

"Pre-symptomatic Ataxia" describes someone who has the genetic mutation to develop Ataxia, but is not yet experiencing symptoms. Thank you to our speakers for covering this important topic from genetic testing, insurance, lifestyle modifications, and early treatment options.

You can check out the recording on our YouTube channel here: https://youtu.be/NIUHhYZCZYk

08/03/2025

Urinary symptoms are sometimes experienced in individuals with Ataxia. While the type of bladder dysfunction varies by condition, these symptoms can be disruptive and impact quality of life.

Join NAF next week, August 6th at 12 PM, for a webinar that highlights the importance of a personalized treatment plan for managing lower urinary tract dysfunction in neurological disorders like Ataxia.

Register here: https://us02web.zoom.us/webinar/register/8817308414129/WN_8LqgSCmPRLOdPeksy_ZzPg

06/12/2025

Our next discussion session via Zoom will be on June 26th at 4 pm, EDT (US/Canada). If you are not already on our email list, please become a member (membership is free) at sca27b.org and you will receive invites to our monthly Zoom meetings.

Send a message to learn more