NAF This Week

Welcome to Episode #8 of NAF This Week! 
Join National Ataxia Foundation CEO Andrew Rosen for a quick look at what’s happening across NAF and the Ataxia community — from research and advocacy to programs, events, and more. 
In this episode: 
This week, Andrew takes a closer look at NAF's strategic plan and the key pillars guiding our work. He highlights initiatives including expanded access to social workers, the website redesign, and the research biofluid repository, sharing how these efforts support NAF's mission and help move progress forward for the Ataxia community.
 
Links & Resources Mentioned: 
🔗 NAF’s 3-Year Strategic Plan: https://www.ataxia.org/state-of-naf/
 
🔗 NAF’s Enhanced Support Program: https://www.ataxia.org/introducing-national-ataxia-foundations-enhanced-support-program/
 
🔗 CRC-SCA Academic Research Community: https://www.ataxia.org/crc-sca/
 
Stay Connected with NAF: Visit www.ataxia.org to learn more about Ataxia, find resources and support, get involved, and follow the latest progress in Ataxia research. 

Welcome to Episode #7 of NAF This Week! 
Join National Ataxia Foundation CEO Andrew Rosen for a quick look at what’s happening across NAF and the Ataxia community — from research and advocacy to programs, events, and more. 
In this episode: 
This week, Andrew discusses the latest developments in Biohaven's resubmitted FDA application for troriluzole, an investigational treatment for Spinocerebellar Ataxia (SCA). He looks back at the drug's regulatory journey, explains the steps that have led to this point, and shares what may come next for the Ataxia community.
Links & Resources Mentioned: 
🔗 Biohaven SEC Filing: https://www.sec.gov/Archives/edgar/data/1935979/000193597926000083/bhvn-20261022.htm
🔗 What is an Investigational New Drug (IND) application?: https://www.ataxia.org/what-is-an-investigational-new-drug-ind-application/
🔗 All About PDUFA Dates: https://www.ataxia.org/all-about-pdufa-dates/
 
Stay Connected with NAF: Visit www.ataxia.org to learn more about Ataxia, find resources and support, get involved, and follow the latest progress in Ataxia research.

Welcome to Episode #6 of NAF This Week! 
Join National Ataxia Foundation CEO Andrew Rosen for a quick look at what’s happening across NAF and the Ataxia community — from research and advocacy to programs, events, and more. 
In this episode: This week, Andrew discusses recent FDA developments and what a new rare disease framework could mean for the Ataxia community. He highlights the importance of patient engagement, outside expertise, and a more predictable drug development process, along with opportunities for the community to learn more and get involved.
Links & Resources Mentioned: 
🔗 Rare Disease Framework Public Meeting – October 28: www.reaganudall.org/news-and-events/events/rare-disease-framework-public-meeting
🔗 FDA White Paper – A New Framework for Rare Disease Review: www.fda.gov/media/195694/download?attachment
🔗 Information about SARA Scores: www.ataxia.org/scasourceposts/snapshot-what-is-the-f-sara
 
Stay Connected with NAF: Visit www.ataxia.org to learn more about Ataxia, find resources and support, get involved, and follow the latest progress in Ataxia research. 

Welcome to Episode #5 of NAF This Week! 
Join National Ataxia Foundation CEO Andrew Rosen for a quick look at what’s happening across NAF and the Ataxia community — from research and advocacy to programs, events, and more. 
In this episode: This week, Andrew shares his excitement about the recent Extreme Hike, which has raised more than $250K so far, and admits to having a little FOMO! He also highlights NAF's partnerships with FARA and Ataxia UK for the upcoming International Ataxia Research Conference (ICAR) and discusses NAF's continued growth and what it means for the organization's future and the Ataxia community.
Links & Resources Mentioned: 🔗 Extreme Hike: https://www.ataxia.org/hike
🔗 ICAR: https://ataxiacongress.org
🔗 FARA: https://www.curefa.org/
🔗 Ataxia UK: https://www.curefa.org/
🔗 Advocacy: https://www.ataxia.org/advocacy
 
Stay Connected with NAF: Visit www.ataxia.org to learn more about Ataxia, find resources and support, get involved, and follow the latest progress in Ataxia research. 

Welcome to Episode 4 of NAF This Week! 
Join National Ataxia Foundation CEO Andrew Rosen for a quick look at what’s happening across NAF and the Ataxia community — from research and advocacy to programs, events, and more. 
In this episode: In episode 4 of NAF This Week, Andrew reflects on the loss of Dr. Susan Perlman, a beloved leader and pioneer in the Ataxia field whose contributions have made a lasting impact on our community. He also shares highlights from his recent travels to Washington, D.C., and Boston, where he is participating in conferences focused on rare disease research, collaboration, and efforts to advance treatments.
Links & Resources Mentioned: 🔗 Ask the Expert with Dr. Sue Perlman:  www.ataxia.org/asktheexpert 🔗 Milken Institute FasterCures: https://milkeninstitute.org/health/fastercures
🔗 Act for ALS: https://milkeninstitute.org/health/fastercures
🔗 Synapticure: https://www.synapticure.com/with/ataxia  🔗 N-Lorem Foundation: https://www.nlorem.org/
Stay Connected with NAF: Visit www.ataxia.org to learn more about Ataxia, find resources and support, get involved, and follow the latest progress in Ataxia research. 

Welcome to Episode 3 of NAF This Week!
Join National Ataxia Foundation CEO Andrew Rosen for a quick look at what’s happening across NAF and the Ataxia community - from research and advocacy to programs, events, and more.
In this episode:
This week on NAF This Week, Andrew shares a behind-the-scenes look at the CRC-SCA face-to-face meeting, where principal investigators and coordinators from research study sites come together to discuss the ongoing natural history study of Ataxia. Learn how this collaboration helps researchers better understand Ataxia and supports progress toward future treatments.
Links & Resources Mentioned:
🔗 CRC-SCA: www.ataxia.org/crc-sca/
🔗 NAF Drug Development Collaborative: www.ataxia.org/crc-sca/interested-industries/
Stay Connected with NAF:
Visit www.ataxia.org to learn more about Ataxia, find resources and support, get involved, and follow the latest progress in Ataxia research.
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