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: Shannon Dunphy Lazo, St. Louis Ataxia Support Group Leader We’re excited to share something new from the St. Louis Support Group—and yes, we’re bragging just a little! In addition to our regular monthly Zoom meetings, we’ve started hosting a quarterly in-person event called Coffee and Conversation. These gatherings Read More…
A generous family stepped forward to MATCH THE MATCH for April’s Accelerate! Double the Drive campaign. They contributed an additional $50,000 in memory of Carol Tate, whose legacy continues to inspire hope for families affected by Ataxia. We’re grateful for her family’s continued support of NAF’s mission to accelerate treatment Read More…
Guest Author: Donna Gorzela, Boston Ataxia Support Group Co-Leader Over time, actual support groups change and evolve but the many memories and friendships we’ve made persist. Isn’t that what support groups are all about? We all have so much in common. We all know that we can lean on each Read More…
Guest Author: Cherry McLoughlin, Western Washington Ataxia Support Group Co-Leader How many of us have taken the time to put our stories to paper? Probably not very many. Yet, how many of us have a story to tell? All of us. Our stories can be about our Ataxia journey, life Read More…
Author: Sherry McLaughlin, NAF Support Group Leader What do you do when you or a loved one has been diagnosed with a Rare Disease? You search for a physician who is knowledgeable, and you seek out others with the same condition. This is exactly why the Pacific Northwest Rare Disease Read More…
Virtual support group meetings will continue on through the spring months with several groups around the nation beginning to host in-person meetings and events. Read the latest support group meeting recaps here. Find an upcoming meeting to join at www.ataxia.org/events. Greater Atlanta Ataxia Support Group Meeting Recap – March 5th Submitted Read More…
Submitted by Shannon Dunphy Lazo Happy Holidays, everyone! We’re glad you were able to join us on Saturday. As people arrived, they were greeted, serving as a mini-introduction. To those who were not able to attend: remember that Zoom is an excellent way to attend without having to worry about Read More…
Virtual support group meetings will continue on through the winter months. Read the latest support group meeting recaps here. Find an upcoming meeting to join at www.ataxia.org/events. Treasure Coast Ataxia Support Group Meeting Recap – December 5th Submitted by Kathi Yule As people were checking into our zoom meeting on Saturday, Read More…
Ataxia support groups continued to meet virtually during the pandemic. Find upcoming support group meetings at www.ataxia.org/events. Feel free to join a group outside of your area/state! Here are the most recent recaps. Treasure Coast Ataxia Support Group Meeting Recap – September 12 Submitted by Kathi Yule Our guest speaker was Read More…
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…
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