DD SIG Navigating the Path Episode 5: The National Ataxia Foundation

Summary

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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

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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.

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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

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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

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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]

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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.

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

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Transcript

[A]

This is for informational and educational purposes only. It does not constitute and should not be used as a substitute for medical advice, diagnosis, rehabilitation, or treatment. Patients and other members of the general public should always seek the advice of a qualified healthcare professional regarding personal health and medical conditions. The Academy of Neurologic Physical Therapy and its collaborators disclaim any liability to any party for any loss or damage by errors or omissions in this publication. The views or opinions expressed are those of the individual creators and do not necessarily represent the position of the Academy of Neurologic Physical therapy. Welcome to 4D Deep Dive into Degenerative Diseases, Gaining insights through casual and amusing clinical conversations. Welcome to 4D, a podcast dropped to you by the Degenerative Diseases Special Interest Group of the Academy of Neurologic Physical Therapy, a component of the apta. I'm Ken Vanako, a physical therapist in the Outpatient Neuro Clinic at Brown University Health and on the Podcast Committee of the DD sig. Welcome to Navigating the Path, our series where each month we introduce our listeners to an organization that supports people with neurodegenerative diseases and their caregivers. To understand a little bit more about the resources available to people with ataxia. I'm excited to be here tonight with Andrew Rosen, CEO of the National Ataxia foundation, along with Ashley Durundo, our liaison, the National Ataxia foundation with DD sig. Andrew, start with you first. Could you tell us a little bit more about the National Ataxia foundation and your role within the organization?

[B]

Hi Ken, thanks for having me. Yeah, so I'm the CEO at naf. I've been with the organization about six and a half years. So NAF has been around for a long time. We were founded in the late 1950s by a neurologist in Western Minnesota who had this disease in his family and wanted to do something about it. And really, for that whole time, NAF has been focused on two main things that we do. We do we fund research, right? So everything from basic scientific research, understanding the disease mechanism of ataxia, to now kind of excitingly more translational in clinical research as treatments get closer to the clinic and then eventually obviously to patients. You would be hard pressed, I think, to find an ataxia researcher almost in the world that hasn't received a grant from NAF at one time or another in their career. And of course many of them, and this is what we hope happens, go on to much larger, maybe NIH grants, set up their own labs and continue to work in the ataxias. And then in addition to Sort of the scientific grant side. We, we sponsor the largest natural history study in the ataxias in the spinocerebellar ataxis, the scas. We sponsor a no cost genetic counseling and testing program so we make it free for patients to be tested for certain types of ataxia. We train neurologists and other healthcare professionals in how to treat ataxia and a number of other things. On the research side, the other part of our mission is really to support people living with ataxia, the patients and their families that are living with the disease. And again, we do that in a number of ways. So we have the largest patient gathering every year at our annual ataxia conference. It attracts six or seven hundred people live and several hundred more online. And we gather every year to educate and share wisdom and also just to be social. And it's an amazingly powerful event, especially for people that are newly diagnosed with the disease.

[A]

It's just like so great the, the breadth of things that the National Ataxia foundation covers there from. It's great to hear the roots come from someone like of course who was living with ataxia and was motivated to, to see change and probably fund an organization like this. And then to see what you're saying. That translation from, from funding for researchers to it sounds like you're talking a little bit about funding for individuals living with ataxia and other resources that the foundation provides. So love to hear more about those patient facing resources.

[B]

So in addition to our conference, we've got more than 60 support groups that are scattered about the country as well as internationally. Many of them meet in person as often as every couple of weeks or monthly. Some are just online, some are specifically for. Most of them are geographic based obviously, but some are also for special interest groups like parents with parents with a child with ataxia, or people under 30 with ataxia for instance, or African Americans with ataxia. All sorts of different groups come together to support each other. And then as you can imagine, we do a whole lot online. We're still a small foundation, although we're growing. We have about 20 people now around the country, but we do a lot online. We, we host a number of webinars every month on the different types of ataxia or various hacks to live with ataxia better. A whole host of things including physical therapy and how that can play a role in, in, in the treatment of ataxia. And so yeah, we do a lot. One thing I will say, we cover all of the ataxias and that literally just on the hereditary side and there are acquired ataxis as well. But on the hereditary side, there are several hundred forms of hereditary ataxia, and they're finding more all the time. So sometimes I feel like we're spread awfully thin across a number of different diseases. But I'll finish this by saying that I think, as you probably know, ataxia is considered a movement disorder. So there's Parkinson's, which is sort of the big one and not a rare disease. And then you kind of move into the rarer side with things like ALS and Huntington's and ataxia. And I think for a long time, ataxia was sort of the ugly stepchild. People didn't really know what it was, hadn't heard much about it. We're trying to change that narrative, and I think we're. We're having some success there. One of the exciting things that's happened just in the last few years for us is that Bill Nye the science Guy, who, one who has grown up in the US and likes science, tends to like Bill. We watched his videos, right. Especially when the substitute teacher came in with the vcr. We were like, yes, it's time for Bill Nye.

[A]

My middle school science days were filled with Bill Nye the science guy.

[B]

Absolutely.

[A]

Classroom.

[B]

Yep. Bill's. Bill has ataxi that runs in his family. And the specific type of ataxia was just discovered a couple of years ago. And so Bill is now really engaged with us and. And is lending his voice to this cause. And it makes a big difference when you've got someone with the kind of reach that Bill has. So we're excited about our work with him. And you're going to. You're going to see more yet this year and into the future with Bill. So I'll leave it there.

[A]

Yeah, yeah. Of course. Challenging to hear that he has folks in his family living with ataxia. But of course, it helps when you have someone so recognizable maybe to help bring attention to, like, a rare disease in this situation. No, it's really great to hear just about all of those resources available to people living with ataxia. You mentioned that there's like 20 core people within the organization itself, but I'm sure, of course, there's many hundreds of people involved. And I was researching a little bit, just looking at the NAF website and seeing that there are these ataxia Centers of Excellence across the countries. Could you speak to some of those and the resources available at those centers?

[B]

Absolutely. So we launched our Ataxia Centers of Excellence, or as we like to call them, ACEs, program about three years ago now. I Think we now have something around 35 aces around the world. I think two thirds of those are in the US and maybe a third are outside. We have a couple of cycles every year where clinics can apply to be an ace. And to become an ace, you really have to do a few things, right. You really have to be a multidisciplinary clinic. So things like being able to offer patients physical and occupational and speech therapy, you participate in research or clinical trials, you have multiple physician specialties available to patients. So they go through a fairly rigorous application process and we don't take everyone. Right. The exciting part has been that sometimes when a specific clinic won't quite make it, they'll ask what they can do to become an ace and then they'll reapply because they go out and actually put resources toward something that they weren't able to check off. And that's really gratifying for us. So really they're the top, you know, not surprisingly, right? These are the top ataxia clinics in the world. They are the ones that are running the clinical trials in the ataxias. You know, the first, the very first and only treatment for any type of ataxia, in this case, Friedrich's Ataxia, was approved just two years ago in 2023. It's exciting, right? That is the first of what we hope are going to be many ataxia drugs. And I can say that, and this is partly because of the great work of these aces, the ataxia drug pipeline has never looked better than it does right now. Now, that said, we have a long way to go. These are, as I've already said, there are, there are hundreds of hereditary ataxias and we're going to need lots of drugs to help treat these patients. But even from where we were 10 years ago, it's really exciting. It's an exciting time in the ataxias.

[A]

Right. You're mentioning all of those different, like, subtypes of ataxia. Spinocerebellar has all. Many subtypes.

[B]

Exactly.

[A]

Courses we get a better understanding of genetics in general and how the, you know, the mechanism or pathophysiology of these conditions. It's great that the National Ataxia foundation has the resources to fund the research and hopefully find medications and other treatments that'll help these folks.

[B]

Absolutely. And you know, one thing I will say is, you know, diagnosis, especially for rare diseases, is always challenging. And when you add in a diagnosis for something like ataxia, which tends to be slowly progressing, many of the ataxias are later onset. So not Friedrichs on The other hand, is often affects kids. But many of these spinocerebellar ataxias are later onset, can be very slowly progressing. For instance, the. The ataxia that runs in Bill Nye's family, which is spinal cerebellar ataxia type 27B, is very slowly progressing. So that's, I mean, in some ways that's good. Right? You'd rather have it slow than fast. But from a diagnosis standpoint, it makes it difficult because a patient might present, you know, with some balance issues. Right. That's often the first symptom that patients have, and I'm guessing it's often the first symptom you all see in the physical therapy world. That can be a whole lot of things. Right. And without, especially if a patient presents without family history, it can be tricky. Right. To identify what that is. And we often see that it's the PT resource that often is the first one to say to a patient, I think you might want to see a neurologist. I think there might be something more going on here than just, gee, I'm losing my balance a little bit. It must just be weakness in my legs, and I'm going to go get a referral for pt. Right. Without any knowledge of what might really be happening there. So you all in the physical therapy world are incredibly important to us, and we want to continue to work to help, educate and support anything we can do so that people can get diagnosed more quickly because it's the first step in treatment development and. And anything they can do to help, you know, support a healthy lifestyle.

[A]

Right. Well, thank you for the plug for physical therapy there. Of course, we're, we're huge fans on this podcast, but it's, it's so true. Like, do we see those individuals who sometimes may not have a diagnosis, and we can pick up on those things early. And of course, getting into a clinic once you're diagnosed early seems like such an important thing to do to get access to treatment and resources. Aside from getting integrated with those clinics, what are some of the other resources that you were speaking to on your website that we could direct folks to, whether they be, like, educational resources or otherwise?

[B]

Yeah. So, I mean, a couple of things that I've already mentioned that I think I can just draw out a little bit. You know, the power of the annual ataxia conference for me comes down to one really important thing. I will see a couple walk in on Friday afternoon, and I can tell by the look on their face they're a little overwhelmed. Right. They are seeing people in Wheelchairs and needing help. And they are not yet there. Right. But they're seeing maybe what their future might look like. And that can be completely overwhelming to them. But 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. They are surrounded by people that know what they're going through. They don't have to put on, they don't have to explain everyone why someone's now got a walker or a cane. It's an amazing. So the power of being around people that share what you're going through. And so to that, I would point people to our support groups. I have the pleasure of being able to either zoom in or actually travel to various support group meetings as often as I can. And those meetings are, again, remarkable. Right. They are people leaning on each other and they're sharing, you know, it's social. They're sharing tips and tricks. Maybe there's a guest speaker, maybe there's a guest speaker on physical therapy and why it matters or on a host of topics. But just being in the same room as people that are that kind of know what you're going through is remarkably important. And then the other thing, I might say two other things. I might say the resources, the videos on our website, either the live webinars, and of course, we record them all. And you can search. We've got the leading. I like to say we have the best Rolodex in the ataxia space. We can get anyone, we can almost get anyone in the world to talk for us. Right. To give a presentation on their specialty, their area of interest. You can find almost any topic you want on our website, including things like, you know, products to buy that help people with disabilities and yeah, again, just. Just ways to live life a little better even through the challenges of ataxia.

[A]

Right. It's like life hacks can be so important and sometimes can be the hardest thing for folks.

[B]

Absolutely.

[A]

To find. So having a community, people come together and share those resources, whether it be through support groups or directly on the website.

[B]

Absolutely. The last thing I might mention is we do do a fair amount of advocacy work as well. Right. So we, we are in Washington, D.C. as often as we can be. We often will join forces with other patient advocacy groups like the Friedrichs Ataxa Research alliance or Farah and do our work together. We will obviously lobby for legislative causes that support our community, but often support the entire disabled community or the entire rare disease community. Right. When you bring us all together, it's a loud voice or it's a louder voice, but we're also pushing for things that matter to the ataxia space. And so one of the things that we've been able to do is really engage our community and advocacy work. I'll be honest, Ken, it's one of the, if you will, it was a silver lining of the pandemic. We did our first hill Day in 2019. I had just started at NAF and there were about 15 of us. We traveled to Washington, D.C. it, as you can imagine, is difficult not only to travel, but to move around the congressional office buildings in a wheelchair is a challenge.

[A]

Right.

[B]

So it was a small group. We did about, I think we had maybe 10 congressional meetings that first Hill Day in 2019. It was great. I mean, I'm not saying it wasn't. It's fun to be in person. Well, then the pandemic hits, of course, and we cancel our in person Hill Day and we go to a virtual model. And now over the last five years, we will have 110 congressional meetings on our Hill Day. There will be 150 or 170 advocates, volunteers from our community that are participating in those meetings because they can do so from home. And so where I was going with this is it's just another way to really engage our community. Sadly, as you may know, a lot of these people end up not being able to work because of their ataxia. They're on disability, but, boy, this is a way that they feel like they can really be productive and it matters. I can tell you we've got several success stories of how our grassroots advocacy work has made a difference in Washington. And with everything going on these days, especially in the medical research area that we are frankly concerned about, it's never been more important to make your voice heard in our nation's capital. So that's another. Another area that I would encourage people, if they're interested, to reach out.

[A]

Yeah, it's so true. And, you know, who better to be advocates than the individuals themselves living with these conditions and of course, know the ins and outs of a typical day for them, which can pose many challenges. It's great to hear you all do such advocacy work, though, and, you know, appreciate all that you do for, for these patients. So thank you very much, Ashley. I want to punt it over to you here. I wanted to circle back, actually to when we were talking about someone who may present to a physical therapy clinic with balance trouble, let's say, might not have any Difficult or might not have a true diagnosis of it, ataxia yet. Could you dive into maybe what you may see that may tune you in to think that maybe they have an ataxia, that type of condition that would lead you to refer them further out.

[C]

Well, thank you for having me here. My name is Ashley Durundo. So I am a physical therapist, not practicing at the moment just due to my role in my family right now, but worked for years in a clinic focusing on individuals with neurologic conditions and amputees. So definitely have seen individuals with ataxia along with a host of other neurologic conditions. So when we first see somebody in the clinic, you know, we'll go through the basics of our PT evaluation. But we also do screening in our evaluations to look for signs that this might. There might be systems involved other than just the basic musculoskeletal system. So as we would be going through our PT plan, then we might see that somebody's not responding the way that we would expect them to respond if they have just a straightforward leg weakness. And some of these other neurologic signs might be jumping out. And we would then refer them to, you know, back to either their primary doctor or to a neurologist, depending on what we're seeing.

[A]

Right. Things like coordination testing. Right. We probably look at ocular motor testing, too, and pick up on any. Ataxic is such a general term. Right. But like dysmetric type of eye movements or limb movements. Right. Would probably cue us into something else that. That could be going on. Absolutely.

[B]

Ashley, can I ask, do you. Do you ask about family history kind of early, later at all in this whole process?

[C]

Yeah, that's a great question. Not specifically family history of ataxia. When we are doing just the general subjective part of our evaluation, we ask about past medical history. I will say I personally would not have specifically asked for family history of ataxia unless I was seeing some of the signs, you know, that we spoke about that sure. Would have seemed more concerning and pointing in that direction.

[B]

It's just so interesting when I. Whether it's maybe a new donor that I'm talking to or someone at our. At our conference or at a support group. And I'll ask them about, oh, you know, was anyone in your family? And it's so amazing how often they'll be like, well, you know, grandma was in a wheelchair, but we just kind of, you know, she was old and that wasn't really anything. But now that, you know, when I really think about it, I guess my dad was a Little, you know, he was unsteady and like, like, as you ask them, it's like, oh, well, guess, you know, that's probably what's happening here. Right. Anyway, it's just. It was just a. Just a question I was curious about.

[A]

No, it is such an interesting point you make there. I feel like I, I hear that all too often that, you know, as. As we've gained knowledge, of course, of different, like, medical conditions over the years, you know, before, you know, like 50, 60 years ago, it was just clumsiness or they didn't have great balance. You know, you hear all those sorts of things. But there wasn't maybe a reason that they teased out or they didn't seek out medical care at that time, for whatever reason. People are living longer now, too. So we're seeing these conditions sort of manifest, as you mentioned, some manifest later in later years. So it is, I guess, interesting that we can really start to put together these family histories now and maybe be more proactive in treating these as individuals.

[B]

Bill Nye's. Bill Nye's family. The mother's is the. His mother's side of the family were Darbies. And so he grew up with all of his cousins, etcetera, with something called the Darby Glide. They used to call it the Darby Glide in his family, and it meant that you walked with an unsteady gait. That's just sort of what. And it was just part of the family. Lauren, eventually they knew that there was something going on here, Right. But just until even two years ago, they didn't know what specific type. And now not only do they know, but there is a treatment that is progressing through the drug development process that looks very promising for their specific type of ataxia. So, you know, things can. Things can change quickly once you've got a specific diagnosis.

[A]

Yeah. I wonder if that's how Bill Nye became Bill Nye the Science Guy. Is his interest potentially in his family's condition of the Darby Glide. But kind of interesting with that. I did want to ask you, Andrew, what's your connection to ataxia? If you don't mind me asking. What get you into the National Ataxia Foundation?

[B]

Yeah. I'll be honest. I did not have any personal connection to ataxia. I. I spent about 20 years in a. In a corporate career. And I'll make a very long story, very short. Sort of had my midlife, you know, my God, I'm turning 40 and I. We had three kids in a very short period of time. And I had been so fortunate in. In you know, in sort of the family I grew up in and I had nothing but opportunities and I just sort of came to a conclusion that I wanted to do something with all these business skills that I had amassed that mattered more. And so I made a kind of a conscious move to the non profit space almost 20 years ago now. And most of my corporate life had been in healthcare, medical device specifically. And so I had heard the term ataxia. But again, as you pointed out, I mean, ataxia can be someone who's had too much to drink or someone who gets a concussion will show signs of ataxia. Right. In fact, the National Football League added the term ataxia to its concussion protocol a couple of years ago because one of their star quarterbacks wobbled off the field and amazingly enough, they put him back in the game. That was a classic sign of a concussion and ataxia symptoms. So anyway, I'd heard of the term, but I was in between jobs. This foundation was, I think, really ready for. I say all the time I'm just the general manager of a small business is really what I am. I, I wear lots of different hats. But naf, we are a non profit, but we function like a business, right? We have to. If we spend more money than we bring in, we're going to be in trouble, like any business. And fundraising is sales with a twist kind of. Right. And all the various functions that I get to play in in an organization our size. So it's been a, it's been a great fit for me. I will say the one thing that was so lucky for me is that the, the interest from the drug companies has really exploded in say the last 10 years. And so I'm able to use kind of those business skills more Right. Than I realized I even really would be when I, when I joined naf. And I think, yeah, again it's, it's an exciting moment in the ataxias. It can't listen, it can't come fast enough, right? There's no way, yeah, these treatments can be developed fast enough for some of these families. But, and so many of them sadly are really, they know that it may be too late to help them, but they really are so focused on their kids and their grandkids. And so, you know, we just, we want to accelerate that development in any way possible, make this space as attractive as we can so that when startup biotechs are thinking about where they want to go. A taxi is a space that looks good because of all the data we have and the tool sets we have et CETERA that make it attractive to them. So it's been a, I feel really fortunate. It's been a great fit for me.

[A]

Yeah, no, it sounds like the, the shift to this non profit world and then to the NAF is definitely a good fit for you. You definitely seem to have a great deal of knowledge and passion for working with these individuals now. So no thank you. So great to hear that story and that transition there. Ashley. I did want to just circle back to you quick too, just to ask about any resources that, you know, you have found to be particularly helpful when you were practicing as a PT from the NAF and sort of any other resources you think that we should highlight from the website or this organization?

[C]

Yeah, well I'll start by saying the two main things that I report on and share with the DD SIG for their newsletter would be events and resources from the National Ataxia Foundation. So I every month approximately take a look at the site and just look for upcoming events the next month or look for resources that would be helpful to this for the newsletter that goes out to clinicians then. So I'll start by saying on events there are a surprising number of support groups and I think it's incredible because I'll say where I would have previously lived and worked. I could not tell you where a support group was for individuals with ataxia. And like you called out, Andrew, there are multiple that are based on geographic area, but there is also the global support group. And multiple of these support groups I see are virtual or webinars, which is helpful for people who don't live in a particular geographic area, but just for those who who aren't able to get out on their own. So I think the support group resources are incredible. I think they're really helpful for clinicians to know to be able to share those things with their patients. So one of the other events that I've tended to pull out and highlight are expert speakers. I've seen a number of expert speakers speaking on different topics. Let's see, one that I had shared for this later this month of July is speaking about chronic cough management. So just a host of different webinars that would be helpful for individuals living with ataxia that clinicians could share that information with, but also for clinicians who might be seeking more education on how to better guide clients with Atexia. So those events I found to be really helpful as far as resources go. There are. This is a very impressive website, Andrew. There are so many resources, truly, and you pointed out a lot of them, but there's so much in here. From a clinician standpoint, I think if you're a clinician who's treating an individual with atexia and you're not familiar with atexia, this is a great place to go to educate yourself a little bit more, but also to familiarize yourself with resources that you can direct the patients to. So some that I found particularly helpful are the webinars.

[B]

Ask the experts.

[C]

Yes, actually experts I've seen have been recorded as webinars. So those I think are super helpful for patient client education. But also clinicians, there's a section called For Professionals and they have a provider resource page and that has a section for individuals who are newly diagnosed with ataxia. So if you're a clinician seeing a client in the clinic who's newly diagnosed with ataxia, this is a great place to point them for some of those facts that someone would want to know when they're newly diagnosed. And in that provider resource page, there's a link to the Ataxia Centers of Excellence, some principal fact sheets that you might provide patients or direct them to. And one that's also listed there, which I love and I think was touched on already, is the Ataxia Marketplace. This is one of my favorite things that I had found on this site. It is a site where you can go and find different adaptive resources for individuals living with ataxia. So I will say from the PT standpoint, you know, we, we know, you know the science and the evidence based treatments, but sometimes we just need that piece of adaptive equipment that we don't think exists or we just need another idea for a piece of adaptive equipment. And it's so refreshing when you can be introduced to new pieces. So like I said, that's called the Ataxia Marketplace and that is such a great resource for clinicians to help patients, but also just to help point patient and clients in that direction. So those are a few of the things that I found to be especially helpful. Like I said, Andrew, it's such an impressive collection. So thank you so much for all the work that your group does.

[B]

Yeah, Ashley, thanks. We are, in fact, we're just about to launch sort of a, I think a refresh of our site. I think the big challenge now as our site continues to get bigger is making it easy to find things. Right? It's, it's how you organize and so we're, we continue to talk about best ways to do that. But yeah, appreciate, appreciate this. We are, we are. One thing I will say about, and I've worked with, I've Worked in different disease areas. I mentioned medical devices before. I've worked with different groups of clinicians throughout my career. We are really fortunate to have a group of clinicians that really put the patient first and their egos second. Right. And that's not always the case when you gather doctors together. But this group, they want to float everyone's boat together. They care about each other and their patients and we really benefit from that. You mentioned the Ask the Expert series that runs almost monthly. We have a new Ask the expert and Dr. Susan Perlman, who is arguably the leading ataxia clinician maybe in the world, runs the largest ataxia clinic, certainly in the US at ucla, hosts that for us. And she just gives of her time and rapid fire answers question after question after question. And you know, I know what's happening online. People are like, oh my God, I, I get almost like a personal visit with Dr. Perlman. I'm not going to miss that opportunity. And it's just an example of the kind of clinical community and we obviously want to. You know, one of the things that we are particularly interested in is this next generation, the first generation of ataxia clinicians. Remember the very first SCA, the very first ataxia gene was identified in 1993.

[A]

Right.

[B]

That's only about 30 years ago. Right. That's not all that long ago. And so this first generation of ataxia researchers and clinicians is kind of nearing or is in retirement now. Right. And so for us, it's really important to be training the next generation and the generation that follows. One of the really exciting programs we've launched recently, we call Ataxia Clinical training is we bring in movement disorder fellows from around the country and around the world for a two and a half day really didactic hands on training. We do it in conjunction with our patient conference so that they can actually do workups on real patients. Right. And of course what we're hoping happens is some of these fellows that maybe haven't quite picked their specialty yet might end up, you know, starting their own ataxia clinic. And so we need as many, we need as many neurologists as possible that not only know and can identify ataxia, but then treat it.

[A]

So inspire the next generation there. That's great. Finally, I did want to ask if, if someone's looking to get more involved with the National Ataxia foundation, where should they start? Andrew?

[B]

Yeah, I mean, I think, I'll be honest, the best place to start is our website, ataxia.org pretty easy to find. And if you do a Google search, we're you know, I guess the good, the good part for us about being a really rare disease is there's not that much competition out there. So you will find us and then really the best way to do it is just become a free member of NAF. So we have about, we're closing in on almost 20,000 free members now. About half of those people are actually people with ataxia. The other half are caregivers and loved ones, family members and professionals and researchers, clinicians, etc. All we really ask for is an email. So all that really allows us to do is email you information.

[A]

Right.

[B]

It takes a minute to sign up and you can unsubscribe anytime you want. But once you become a free member, then you're really going to be in the loop on what's going on. And of course, what's exciting about a database now that's got 20,000 people in it is that you can imagine we can slice and dice that database, you know, a bunch of different ways. So if there is a support group meeting happening in New Jersey around Ashley, we can email just the people within a 50 mile radius of the support group. For instance, or if there's a drug company that's looking to recruit for a clinical trial for people with SCA3, we can slice our database and only send out that information to the people that care about it. So that Ken would be the first thing I would say is just become a free member of naf. It's not going to cost you anything. And then you'll be in the loop on kind of what's going on. And then I guess the other thing would be just do spend some time on the site if you're newly diagnosed. There's lots of resources if you've got a specific ataxia type that you want to dig into. Ashley mentioned the webinars. I think they're a great way of reaching out. And then you can, obviously you can always call us. We've got great people that answer our phones and can guide you in whatever direction you want to go in. So those would kind of the, the easy, easy ways to get involved.

[A]

Yeah, sounds like some good push and pull type of resources that you can get right there. And I'm gonna go sign up right after I. We hang up here.

[B]

Great.

[A]

But really the last question I have for both of you is really a tradition that we have here on the DD SIG where we ask each of our guests what they like to do outside of work. So maybe Andrew, we can start with you first.

[B]

Okay. Well, I have three, I have three college kids right now, so getting used to sort of empty nesting. Although they're, they somehow come home for the summer all the time, which is. Which. You know, it's funny how, how you, you just kind of go back to what life was like before they left. But I, I guess on a personal note, I'm in the middle of training where we, we tend to do one big fundraiser a year around something sort of active and in support of maybe our Ataxi community that can't always be as active as they'd like to be. We are, a group of us are doing what is called the Rim to Rim hike at the Grand Canyon in October, which is a rather lengthy one day hike from the North Rim to the South Rim. So you go down and up. It's a little over 25 miles. And so I am, I am in significant training for that because it would be a miserable experience if I, if I didn't. So that's what, I'm spending a lot of time in the gym and on local trails these days when I'm not working.

[A]

Practically hiking a marathon there.

[B]

Yeah.

[A]

Pretty cool.

[B]

Yeah, that's exactly right. And it's, it's either straight down or it's straight up. There's not a lot of in between.

[A]

Yeah. When are you doing that?

[B]

That is in mid October.

[A]

Feeling ready and.

[B]

Yeah, well, I'm feeling, I'm feeling better, but I've still got, I've still got a. I got to get more miles on my legs, let's put that way.

[A]

That'll be such a cool experience though. Very neat. And then, Ashley, what do you like to do when you're not working?

[C]

Well, Andrew, sort of the opposite situation as you. I have two children under the age of 2 of 2 years old. So yeah, so I, that's what I do. Take care of two children under the age of two. But. So there's not a whole lot of spare time. But you know, before these little guys came along, I was with, I would be with Andrew in the hiking. There's some hiking that I love to do. My family lives in Pennsylvania and there are parts of the Appalachian Trail that run through there. So I would have spent a lot of years, a lot of years and hikes there. So hopefully I can get back to more of that.

[B]

Put the little ones in a backpack and off you go. Right?

[C]

Yes. Yep.

[A]

That's great. You've officially joined the whole podcast Active, either running or hiking crew. We're all, I think, pretty active.

[B]

Well, you guys are Physical therapists. I mean, come on.

[A]

Well, thank you so much for being on the podcast tonight. I've certainly learned a lot. I gotta go look through some resources now on the NAF web website and have a whole host of resources to share with my patients with ataxia. So thank you both very much.

[C]

Oh, thanks so much for having me.

[B]

Great. And if there's anything more NAF can do to help. We want to keep building these resources and educating as many people as we can. So please stay in touch and we'll do the same.

[C]

Awesome.

[A]

Thank you for that offer. Appreciate that. Thanks for joining us. Special thanks to our guest today, Andrew Rosen from the National Ataxia foundation and Ashley Durundo, the DD SIG liaison for the naf. This podcast was produced and edited by the ANPT Degenerative Diseases Special Interest Group podcast team. For more information on the SIG and the ANPT, visit www.neuropt.org. our podcast team includes Sara Zala, Christina Burke, Karm Padgett, Jeff Schmidt, Shannon Brown, Aisha Onani, and I'm Ken Vanako. Thanks to Jimmy McKay for providing music. Please share this episode with a colleague.

[C]

To tell you guys, we do have bloopers.

[A]

And Ashley. Ashley Peters. Is that right?

[C]

No.

[A]

So you can sneeze and pause and do whatever.

[B]

Boys are easier. We're just simpler. I'm not sure we ever really catch up, but we are just simpler.

[A]

If only we could have reported the blooper of me running to my breaker box to flip my breaker because the multiple AC units are running like trip the breaker. It also tripped the WI FI router and I'm scrambling.

[C]

Can we.

[A]

Yeah.

[C]

Can we edit this part out because.

[A]

Yeah, that's all right.

[C]

I think it was really smooth. Other than the whole missing Ken situation.

[A]

Should I do the whole navigating the path intro? Are we beyond that?

[C]

All right, good night.