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Community Response Regarding Troriluzole Delivered to FDA

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…

NAF Team Member Joins Climbing Kili for a Cure

Pictured: Tanoa (left) and Mike (right) at NAF’s 2023 Annual Ataxia Conference in Las Vegas. 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 Read More…

Unraveling Ancestry: Mary Hogan’s Journey

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…

Tell Us Why You Think Ataxia Deserves Regulatory Flexibility

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…

Advocating for Ataxia: My Virtual Experience on Hill Day

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…

Overcoming Ataxia: How IVF PGD Empowered Jessica’s Journey

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 an Accountant

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…

11 ejercicios para pacientes con ataxia

Autores invitados: Sheng-Han Kuo MD, Chen-Ya Yang, MD, MPH, and Geraldine Yu, PT, DPTSoporte técnico: Tiffany Chen BS, Johns Hopkins UniversityTranslator: Roberto Cieza PhD   La ataxia es un trastorno neurológico que afecta a personas de todas las edades. Las personas que viven con ataxia pueden experimentar una serie de problemas Read More…

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