Bill Nye the Science Guy is speaking at the 2024 Annual Ataxia Conference! Register now. LEARN MORE!
This is a periodic newsletter for Ataxia clinicians to keep them up-to-date on patient resources and other medical news. To begin receiving this newsletter, join as a professional member of NAF at www.ataxia.org/JoinNAF. Hello from NAF’s Clinical Services Team If you are new here, welcome! We hope you are new Read More…
Last month we asked for your feedback about the FDA’s decision to refuse to file Biohaven’s NDA for troriluzole. More than 3,000 people stepped up to make their voices heard! 97% of respondents agree that the FDA should apply regulatory flexibility and accept the NDA filing for troriluzole for a Read More…
My name is Tanoa and I am NAF’s Social Media Coordinator. I am proud to announce that I will be climbing Mount Kilimanjaro alongside Mike De Rosa this October! I will be there to document the journey through pictures and video and support Mike’s efforts as a compatriot on his Read More…
Step into the world of Mary Hogan, where genealogy goes far beyond a mere hobby and leads to learning about a pervasive genetic disorder called SCA27B. A Family Affected – The “Darby Glide” Many of us have logged onto Ancestry.com and tinkered around for a few hours. We’ve seen the Read More…
Thank you for submitting your comments for the FDA! NAF gathered feedback from the Ataxia community to submit to the FDA. We’re concerned with the FDA’s decision to refuse to file Biohaven’s new drug application (NDA) for troriluzole without a full review of the clinical trial results. Read our full statement Read More…
Thank you for submitting your comments for the FDA! Troriluzole, an experimental drug being developed by Biohaven, completed Phase 3 clinical trials last year. While the primary endpoint assessing benefit across all Spinocerebellar Ataxia (SCA) types was not met, Biohaven believes the results show benefit among participants with SCA Type 3 Read More…
Author: Mark Hazlin, NAF Board Member In 2021, as I logged into the virtual platform for the National Ataxia Foundation (NAF) Hill Day for the first time, I was nervous. As a PR person in Washington, DC, I’ve been to these advocacy events before. I have a good idea of Read More…
Family planning when faced with a hereditary disease can create difficult decisions. Read about one woman’s remarkable journey of courage, hope, and determination in the face of adversity. Jessica shares her experience utilizing in-vitro fertilization preimplantation genetic diagnosis (IVF PGD) to start a family free from the shadow of Ataxia. Discover how Read More…
NAF is hiring a full time Accountant. This person will be responsible for for all core accounting functions including: A/P and A/R, payroll, maintaining the general ledger, journal entries, reconciliations, and assisting with the month-end close. Our staff has the option of working remotely, with quarterly in-person collaboration days. This 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…
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