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).
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Guest Author: Jay Armstrong, NAF Support Group Leader At my 7 year olds son’s first baseball practice the coach asked if a parent would be willing to help with a pop-up drill. It was mid-day. Hot. And most of the parents were tucked deep in the shade. The coach, a Read More…
As the summer gets going, many of our Support Groups have been meeting virtually to stay connected. Check our events calendar for upcoming virtual meetings. Below are recaps about some recent Support Group meetings. Treasure Coast Ataxia Support Group Meeting – June 6th Submitted by Kathi Yule Lisa Cole opened our Read More…
COVID-19 is affecting many areas of life. While our Support Groups haven’t been able to meet in person because of Stay At Home orders across the country, many have gone virtual. Check our events calendar for upcoming virtual meetings. Below are recaps about some recent Support Group meetings. Greater Atlanta Read More…
Author: Amy Draves Upon learning that I (Amy) for sure had Ataxia of some kind, I joined the Facebook page of the National Ataxia Foundation. Connecting with people who knew so much more than I did was important to me. On a post by Teressa Cocarro, I saw she was Read More…
Check out the latest news and meeting recaps from our Ataxia Support Groups around the country. Chicago Ataxia Support Group – December Meeting Recap The Chicago Ataxia Support Group Meeting was held on Saturday, December 14. It was a good turn out with 17 people attending. We all enjoyed lots Read More…
Submitted by Amy Draves We had a relatively small in numbers meeting but LOTS of encouragement and support from each other. We had two speakers – Karen Lawrence from RHI and an enthusiastic, wheelchair athlete named Deb. Karen is in charge of the adaptive sports program which is growing Read More…
It can be hard to connect with other people who have Ataxia. NAF has a number of support groups around the country to help you learn and meet others. There are also lots of great online resources from other members of the Ataxia community. Finding them can be difficult if Read More…
Author: Lauren Sormani, NAF Support Group Leader I was diagnosed with Spinocerebellar Ataxia Type 8 in 2017 when I was 21 years old. A few months after my diagnosis I found a support group near me and I attended. I was thrilled to meet other people with Ataxia, but what Read More…
Author: Lori Shogren, Community Program and Services Director It was a pleasure to attend the Twin Cities Ataxia Support Group Meeting on November 16. This was a working meeting to develop the group’s 2020 programming. It was great to see everyone participate in this process by sharing their ideas and Read More…
Photo: A few members got together for a Preholiday Fun Lunch Saturday, November 16 at the Fish Company, Bass Pro in Northfield, Denver. Author: Charlotte DePew, NAF Support Group Leader The quarterly Denver Ataxia Support Group met at Swedish Medical Center on Saturday, October 19, 2019. Because of new hospital Read More…
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