About this episode
Welcome back to Research Renaissance, presented by the Karen Toffler Charitable Trust. In this episode, host Deborah Westphal explores the cutting edge of rare disease research with special guests Andrew Rosen, CEO of the National Ataxia Foundation (NAF), and Dr. Lauren Moore, NAF’s Chief Scientific Officer.Together, they unpack how the NAF has evolved from a small support-focused nonprofit into a strategic, science-driven organization that’s advancing treatments and reshaping what’s possible for people living with ataxia—a rare, progressive neurological condition affecting movement and coordination.🔍 In this episode, we explore:The history and mission of the National Ataxia Foundation—from its 1957 founding to its current research initiativesWhat ataxia is, how it’s diagnosed, and why it’s so often misunderstood or misdiagnosedThe diagnostic odyssey patients face and how genetic testing is both essential and still evolvingHow patient advocacy, family involvement, and rare-disease communities are accelerating the pace of scientific discoveryLauren’s personal journey from biomedical physics student to ataxia researcher—sparked by her father’s diagnosisWhy wearable tech, remote trials, and AI are changing the game for neurological researchThe power of public-private partnerships and how the first FDA-approved ataxia treatment led to a $7.3B acquisition by BiogenWhy “rare” doesn’t mean small—and why rare diseases deserve different standards of study, funding, and approval🧠 Key Takeaway:Treatments are on the horizon—but getting there takes relentless advocacy, strategic funding, and courageous participation from patients and families. As Andrew puts it: “We’d love to put ourselves out of business someday. Until then, we’re here to build the infrastructure that gets us there.”🌐 Resources & Links:National Ataxia Foundation (NAF)Karen Toffler Charitable TrustLearn more about hereditary ataxias and ongoing research initiativesSupport or participate in patient-driven research and advocacy🎧 Subscribe to Research Renaissance Available on Apple Podcasts, Spotify, and all major platforms. For more conversations at the intersection of neuroscience, technology, and purpose-driven science, follow us at tofflertrust.org or get in touch.To learn more about the breakthroughs discussed in this episode and to support ongoing research, visit our website at tofflertrust.org. Technical Podcast Support by Jon Keur at Wayfare Recording Co.
