
A Patient’s Roadmap for Speaking Up About FDA Decisions
When the FDA issues a Complete Response Letter (CRL), it can be an emotional moment for individuals and families who are eager for progress in Ataxia research and treatment. A Read More…
The Ataxia Community Comes Together in Orlando April 9–11, 2026 for the Annual Ataxia Conference! LEARN MORE
Personal stories are one of the most powerful tools in advocacy. When policymakers hear directly from individuals and families affected by Ataxia, it puts a human face on the issue and helps them understand why action is urgently needed. Your voice can inspire change, influence decisions, and bring attention to the realities of living with a rare disease. By sharing your story, you help us speak louder, together.
Need some inspiration? Read other member stories at www.ataxia.org/members.

When the FDA issues a Complete Response Letter (CRL), it can be an emotional moment for individuals and families who are eager for progress in Ataxia research and treatment. A Read More…

Ataxia doesn’t wait—and neither should treatment. 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 Read More…

Guest Author: Linda Chase, Able Hire Entering the political arena can be challenging – especially for individuals with disabilities such as Ataxia. However, your journey can also be an inspiring Read More…