4D: Deep Dive into Degenerative Diseases – Navigating the Path Episode 5

"The National Ataxia Foundation"
Hosted by Ken Vanako (A), with guests Andrew Rosen (B) – CEO of NAF, and Ashley Durundo (C) – NAF Liaison, DD SIG
Date: July 31, 2025

Episode Overview

This episode spotlights the National Ataxia Foundation (NAF) — a leading organization supporting people living with ataxia, their families, and clinicians. Host Ken Vanako interviews NAF CEO Andrew Rosen and physical therapist/AFT liaison Ashley Durundo about the foundation’s mission, resources, research initiatives, the Ataxia Centers of Excellence, diagnostic challenges, available support, advocacy, clinician education, and ways for listeners to get involved.

Key Discussion Points & Insights

1. Mission and History of the National Ataxia Foundation

• Background:

  • NAF founded in the late 1950s by a neurologist personally affected by ataxia ([01:54]).
  • Focus areas: funding research (from basic science to clinical) and supporting those living with ataxia.

• Quote ([01:54]):
  “For that whole time, NAF has been focused on two main things... fund research... [and] support people living with ataxia, the patients and their families.” – Andrew Rosen

• NAF supports both researchers with grants (including many who go on to NIH funding) and patients/families directly with conferences, support groups, and genetic testing ([01:54]).

2. Resources for People Living with Ataxia

• Support Networks:

  • 60+ geographically and demographically diverse support groups, both in-person and online ([04:50]).
  • Special groups for specific populations (young adults, parents, African Americans, etc.).

• Education & Community Events:

  • Annual Ataxia Conference: largest patient gathering each year; vital for new diagnoses ([04:50], [13:43]).
  • Monthly webinars and “Ask the Experts” sessions, including practical “life hacks” and updates on physical therapy ([04:50], [30:41]).

• Quote ([13:43]):
  “By Sunday morning, when people are leaving the conference, it is amazing to see the look on those same people’s faces, which is, for the first time now, they don’t feel alone.” – Andrew Rosen

3. Bill Nye’s Involvement and Raising Awareness

• Bill Nye’s family is affected by a rare type of ataxia; he’s now a public advocate for NAF ([07:14]).

• His involvement helps draw national attention to a rare condition often neglected in public discourse.

• Quote ([07:14]):
  “Bill is now really engaged with us… it makes a big difference when you’ve got someone with the kind of reach that Bill has.” – Andrew Rosen

4. Ataxia Centers of Excellence (ACEs)

• Launched 3 years ago; now ~35 centers worldwide ([08:29]).

• Centers must meet rigorous multidisciplinary criteria—providing PT, OT, speech, access to clinical trials, and multiple physician specialties.

• Only Friedrich’s Ataxia currently has an FDA-approved treatment (since 2023), but drug development pipeline is rapidly growing.

• Quote ([08:29]):
  “The ataxia drug pipeline has never looked better than it does right now... It's an exciting time in the ataxias.” – Andrew Rosen

5. Research, Diagnosis, and the Role of Physical Therapy

• Challenges in Diagnosis:

  • Ataxias are diverse (hundreds of types) and often present later in life with subtle symptoms—making early, accurate diagnosis difficult ([11:03]).
  • Physical therapists are often first to spot signs and can prompt appropriate referrals.

• Quote ([11:03]):
  “We often see that it’s the PT resource… who says… ‘I think you might want to see a neurologist.’” – Andrew Rosen

• PT Practice Insights ([19:50]):

  • Ashley discusses differential diagnosis and the importance of referring on when musculoskeletal explanations don't fit clinical presentation.

• Family History:
  Raised as a key (but often overlooked) diagnostic clue. Many families overlooked inherited symptoms as “clumsiness” ([21:54], [23:25]).

6. Notable Patient & Family Stories

• Bill Nye’s family used to refer to their characteristic gait as the “Darby Glide” before they understood the genetic basis ([23:25]).
• Those newly diagnosed often experience anxiety at NAF events, but quickly gain hope and support from the community ([13:43]).

7. Advocacy and Community Engagement

• NAF is active in partnering with other organizations for legislative advocacy—moving from small in-person “Hill Days” to hundreds of virtual meetings since the pandemic ([16:19]).

• Advocacy is empowering for those with ataxia who may not be able to work due to their condition.

• Quote ([17:31]):
  “It’s just another way to really engage our community… this is a way that they feel like they can really be productive and it matters.” – Andrew Rosen

8. Resources for Clinicians

• NAF’s website is a hub for:

  • Upcoming events, webinars, and support group listings ([28:07]).
  • Professional resources (e.g., Ataxia Centers of Excellence list, printable factsheets).
  • The Ataxia Marketplace – adaptive equipment recommendations ([30:41]).
  • “Ask the Experts” monthly sessions, often hosted by Dr. Susan Perlman ([32:30]).

• Quote ([30:41]):
  “If you’re a clinician who’s treating an individual with ataxia… this is a great place to go to educate yourself… and direct patients to.” – Ashley Durundo

9. Training the Next Generation

• NAF runs hands-on clinical training for movement disorder fellows to build future ataxia clinicians ([34:19]).

• Quote ([34:19]):
  “…the very first SCA, the very first ataxia gene was identified in 1993… So this first generation of ataxia researchers and clinicians is kind of nearing retirement now. For us, it’s really important to be training the next generation…” – Andrew Rosen

10. How to Get Involved

• Start by joining NAF as a free member through their website ([35:32]).

• Membership ensures updates about local/virtual events and research.

• Deep resource dive possible on ataxia.org, including ways to connect via phone ([35:32]).

• Quote ([35:32]):
  “All we really ask for is an email… once you become a free member, then you’re really going to be in the loop on what’s going on.” – Andrew Rosen

Notable Quotes & Moments

• Bill Nye’s Family Story ([23:25]):
  “They used to call it the Darby Glide in his family, and it meant that you walked with an unsteady gait… before, they didn’t know what specific type. Now… there is a treatment that is progressing through the drug development process that looks promising for their type of ataxia.” – Andrew Rosen

• Power of Community ([13:43]):
  “By Sunday morning… for the first time, they don’t feel alone. They are surrounded by people that know what they’re going through.” – Andrew Rosen

• Closing Reflections from Andrew on NAF ([24:32]):
  “I wanted to do something with all these business skills that I had amassed that mattered more… NAF, we are a nonprofit, but we function like a business… fundraising is sales with a twist…” – Andrew Rosen

Timestamps for Key Segments

• Introduction & NAF History: [00:00–04:12]
• Patient Support & Bill Nye’s Role: [04:12–07:45]
• Ataxia Centers of Excellence (ACEs): [07:45–10:35]
• Diagnosis & Physical Therapy’s Role: [10:35–13:43]
• Importance of Support Groups & Community: [13:43–16:19]
• Advocacy Initiatives: [16:19–19:50]
• Clinical Identification & Family History: [19:50–24:09]
• Andrew Rosen’s Personal Path: [24:09–28:07]
• Clinician Resources, Website Overview: [28:07–34:19]
• Training Future Clinicians: [34:19–35:18]
• Getting Involved with NAF: [35:18–37:48]
• Personal Reflections & Wrap Up: [37:48–41:06]

Takeaways

• NAF is central to both research and patient/family support in the ataxia community.
• Support groups—virtual and physical—provide invaluable resources and connection for the newly diagnosed.
• The Ataxia Centers of Excellence network advances care and fosters clinical research collaborations.
• Physical therapists have a special front-line role in early recognition and referral for ataxia.
• The NAF website (ataxia.org) is a vital portal for resources—for both families and health professionals.
• Membership is free, highly encouraged, and leads to targeted support.
• Advocacy and training the next generation of clinicians are NAF priorities as treatment options accelerate.

For more information or to join the National Ataxia Foundation, visit ataxia.org.