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).
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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 Research,” Andrew discusses NAF’s commitment to accelerating treatment development, supporting families affected by Ataxia, and building a world without this devastating disease. The conversation touches Read More…
Bill Nye opens up about his personal connection to Ataxia, a progressive hereditary disease. He lost is father to Ataxia and has many family members who are affected, including his sister and brother. Bill Nye will share a series of 4 short videos to his 23+ million followers on social Read More…
NAF is hiring a full time Community Services Coordinator. This person will play a crucial role in the management and enhancement of the organization’s network of support groups, aiming to improve the quality of life for individuals and families affected by Ataxia. They will oversee support group operations, build and Read More…
NAF Awarded a Record Number of Projects in 2024 18 Studies Funded Totaling $845k Funded! We had our most competitive year ever for Ataxia research grant applications! As a result of the generosity of our donors, NAF was able to fund a record number of Ataxia research grants in 2024! Read More…
We’re thrilled to introduce some fresh faces joining our mission here at NAF! Meet our newest board member and the five staff who have joined our team this year. With diverse backgrounds, talents, and a shared passion for making a difference, these individuals bring unique perspectives and skill sets that Read More…
The new year can be a time for reflection and anticipation. At NAF, it is especially true for a change to our Board of Directors this year. We bid a heartfelt farewell to two esteemed Board Members, Cindy De Mint and John Dwyer, who have generously dedicated their time and Read More…
The following is a high-level overview of the Katie Campbell CRC-SCA Face-to-Face Meeting held from September 11-13, 2023, in Bloomington, Minnesota. This meeting focused on logistics and discussion of the ongoing Clinical Research Consortium for the Study of Cerebellar Ataxia (CRC-SCA) Natural History Study. Session 1: CRC-SCA Progress and Introductions 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…
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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