Skip to content

Registration for 2024 Annual Ataxia Conference is NOW OPEN! Early-bird discount available for a limited time.  LEARN MORE!

NAF

NAF is Hiring a Regional Development Manager

NAF is hiring a full time Regional Development Manager for the Western region of the United States. This person will be responsible for generating revenue via traditional non-profit revenue streams including major gifts, recurring gifts, planned gifts, individual giving, corporate and foundation giving, memorials, third party fundraising events and sponsorship Read More…

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

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…

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…

2023 United Against Ataxia Hill Day

Annual United Against Ataxia Hill Day was on September 20, 2023. At this virtual event, Ataxia advocates spoke with their Congressional Members to help them fully understand what Ataxia is and what legislative action is needed.   5th Annual United Against Ataxia Virtual Hill Day Was a Huge Success Virtual Event 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…

Translate »

Join the Ataxia community today!

Become a free member for exclusive content from NAF.