SCA27b Ataxia Foundation

Reminder - Our next support group Zoom meeting will be Monday, NOV 4th, at 3:00 EST US/Canada. We will discuss interesting discoveries based on SCA27B post-mortem brain research and avenues to become a future brain donor for SCA27B research. I will also announce some exciting news about a graduate social work intern who will be joining us from Arizona State University in the spring. Social workers can assist with all kinds of disability & counseling services that our community could benefit greatly from. If you would like to participate in the Zoom support group meeting and are not currently on our email distro list, please email us at [email protected] and/or become a member at sca27b.org. We will send you the Zoom link. Hope to see you on November 4th!

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https://abcnews.go.com/GMA/Culture/video/bill-nye-discusses-rare-neurological-condition-ataxia-115251537

Video Bill Nye discusses rare neurological condition ataxia The Science Guy teams up with "GMA" sponsor the National Ataxia Foundation to raise awareness about the rare condition that affects tens of thousands of people worldwide, including some of his family members.

Our next SCA27B support group meeting will be on NOV 4th at 3:00 EST US/Canada. The Zoom link will be emailed out to all members. To become a member (it's free), please complete the very short membership form on our website, sca27b.org
I hope you can join us! We will be discussing interesting research discoveries based on SCA27B postmortem brains and avenues to become a future brain donor for ataxia research. I will also tell you a little about the graduate social worker intern from Arizona State University who will be doing great things for our foundation next semester. There will also be plenty of time for discussions and questions.

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Bill Nye, Science Guy, speaks out on ataxia Ataxia, often misdiagnosed as Parkinson's or MS, has affected Bill Nye's family — and now he's spreading the word on genetic testing.

Check out the link to watch the recording

Have you ever wondered about what Deep Brain Stimulation (DBS) is or how it can be used to treat Ataxia? We recently hosted a webinar with Dr. Ihtsham ul Haq discussing the limitations of DBS, as well as what research is being done right now on DBS for Ataxia.

If you missed last month's webinar “All About Deep Brain Stimulation", you can watch it on our YouTube channel now: https://youtu.be/GmGCE58-iUI

Are you interested in coming to the 2025 Annual Ataxia Conference (AAC)? In-Person travel grants are now open, as well as Virtual Scholarships. These are available for individuals with Ataxia, both adults and children, who may need financial assistance. We are offering a limited number so apply today!

Learn more about AAC or apply here: www.ataxia.org/2025AAC/

If you have SCA27B, this is a reminder to complete the SCA27B survey from University of Chicago if you haven't already. This is a great one to participate in as researchers are working hard to determine how lifestyle & environment interact with genetics. The information for the survey is attached here.

This trial did not include a cohort of SCA27B patients, but this drug may also be effective in slowing down the progression of ataxia in 27B, let us hope 🤞🤞

Exciting news released by Biohaven today! Their 3-year clinical trial for troriluzole to treat SCA met all of its primary endpoints and showed a 50-70% slowing of disease progression. They plan to submit a New Drug Application to the FDA for treatment of all types of SCA. We'll keep you updated as we learn more. Check out the full press release at www.ataxia.org/pharmanews.

Here is the last of 4 videos by Bill Nye explaining the rare neurodegenerative movements disorder, Ataxia, that runs in our family. The family tree he uses in the video is the one I made for our family reunion last year. To learn more, check out sca27b.org

September 25 is International Ataxia Awareness Day

Bill Nye Shares Family's Ataxia Struggle: 'Every Time You Lose Your Balance, You Think This Is the End' (Exclusive) Bill Nye, the beloved 'Science Guy' says many of his family members suffer from Ataxia, a rare neurological disorder that their ancestors had in colonial times.

Here is the 3rd of the 4 Bill Nye videos on Ataxia. To learn more about the type of ataxia that runs in Bill's family, check out sca27b.org

We Can Change the World with Research I’ve always said that together we can change the world and that’s true for advancing research about Ataxia - a neurological disorder my family has struggled ...

Check out the plug Bill gave about Ataxia on CNN after his talk on climate change

Bill Nye Talks About Ataxia on CNN Bill Nye brings awareness to Ataxia and talks about his family's connection to the disease on CNN.

Have you ever wondered about whether gene therapy could be used to treat Ataxia in the future? We recently hosted a webinar with Dr. Carolyn Yrigollen discussing the limitations of gene therapy technology, as well as what research is being done right now on gene therapy for Ataxia.

If you missed last month's webinar “All About Gene Therapy", you can watch it on our YouTube channel now: https://youtu.be/rqqTemH-1XQ

Join us October 9th 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/4416972218122/WN_ArZZ-DjtTQOrAbEOtr2cPA

https://youtu.be/Mk_OGpvNcMc?si=GcCuNbSvPnTNWxtG

Ataxia In My Family Ataxia has affected my family, and thousands of others, for centuries. But together, we can raise awareness and support vital research. Check out www.youtube...

Our next SCA27B Zoom discussion group meeting will be held on Friday, SEP 6th at 8pm EDT (US/Canada). If you have not received an invite to attend the meeting and would like to participate, please email us at [email protected] to request the Zoom link.

Send a message to learn more

Our next discussion group via Zoom will be on SEP 6th, 8pm EDT (US/Canada). Please contact us at [email protected] if you would like an invite to join.

Send a message to learn more

The University of Chicago (PI - Dr. Gomez) is conducting a survey-based study to learn about the genetic and environmental factors that impact onset, severity, and progression of SCA6 and SCA27B. This study involves the creation of a database of genetic, clinical, and environmental information from people who have a diagnosis of SCA6 or SCA27B. Click https://redcap.uchicago.edu/surveys/?s=KK7N44F43HMDNYY3 for the survey. Please share this survey with anyone who is genetically diagnosed with SCA27B.

redcap.uchicago.edu

Chair Yoga & Mobility for Ataxia | July 24, 2024 Sacred Mountain Yoga's philosophy is simple, if you can breathe you can do yoga. They teach a non dogmatic, no-fluff approach to yoga. It's accessible for pe...

Join us July 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/2216972196323/WN_WgAbmpfITwm4xCtOPvwFBA

Here is the University of Miami news release and lay summary of the recent paper about the genetic flanking sequences that protect most of the population from incurring the GAA repeat expansion in the FGF14 gene that causes SCA27B. This article also gives a shout out to the SCA27b Foundation and Bill Nye: "Drs. Zuchner, Brais and others are working with the SCA27b Foundation to develop models to better understand the disease and possibly test therapies. Bill Nye (The Science Guy), who has spoken about the spinocerebellar ataxia 27B in his family, has also shown great interest in this work."

New Study Shows DNA Sequence Protects Against Spinocerebellar Ataxia - InventUM Miller School researchers found one-third of people don't have the DNA sequence that protects against spinocerebellar ataxia 27B.