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).
SIGN THE PETITION
Cameryn’s story is a powerful reminder of why we can’t wait for progress in Ataxia treatment development. While Ataxia affects each person differently, every voice matters in the fight for treatments and a cure. Watch her story, then share your own on social media with #KnowAtaxia to raise awareness and bring us closer—together—to a world without Ataxia.
Share your story about living with Ataxia. For Cameryn. For everyone still fighting. Every voice brings us closer to a cure!
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NAF is hiring a full time Regional Development Manager. This person will be responsible for generating revenue via traditional non-profit revenue streams including major gifts, Read More…
Xtreme Hike 2025: Grand Canyon South Rim 18 hikers. 1 Grand Canyon. 1 mission: A world without Ataxia. MEET THE HIKERS FULL PARTICIPANT LIST FOLLOW Read More…
Grief is universal—painful, sticky, and nonlinear. For those navigating chronic illnesses like Ataxia, grief often resurfaces repeatedly, in waves, each time a new change or Read More…
We’re excited to share that our CEO, Andrew Rosen, was recently featured on the Mission Matters podcast! In the episode, titled “Raising Awareness and Advancing Read More…
Ataxia is a family problem. It affects the individual diagnosed of course, but encompasses the rest of the family as caregivers, and those who must Read More…
My name is Lisa Jockims. I am 56 years old and I live in Saskatoon, Saskatchewan Canada. I have been recently diagnosed with Ataxia Telangiectasia. Read More…
Hereditary Ataxia and Genetic Testing: A Family Affair Original Member Story Published in Generations – Spring 2009 When I was given the diagnosis of “Spinocerebellar Read More…
I am Spanish, I am 30 years old and I am a carrier of SCA3 ataxia. My grandmother and my aunt died due to the Read More…
Join NAF and our partners at FARA in advocating for Ataxia and rare disease related policies during our annual United Against Ataxia Hill Day on September 17th! Advocates will have Read More…
EASTERN TIME ZONE Support group meetings are a great way to socialize and learn with others who are affected by Ataxia. We welcome you to join us! The discussion is Read More…
CENTRAL TIME ZONE Support group meetings are a great way to socialize and learn with others who are affected by Ataxia. We welcome you to join us! The discussion Read More…
EASTERN TIME ZONE Support group meetings are a great way to socialize and learn with others who are affected by Ataxia. We welcome you to join us! The discussion Read More…
