← 4D: Deep Dive into Degenerative Diseases - ANPT
4D: Deep Dive into Degenerative Diseases - ANPT
DD SIG Navigating the Path Episode 8: Mission MSA
00:34:11
In this episode, host Ken Vinacco interviews Mission MSA CEO Joe Lindahl, and DD SIG liaison physical therapist Lindsay Beatty to share how the organization champions connection, education and research related to Multiple System Atrophy.
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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. Welcome to 4D Deep Dive into degenerative
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Diseases,
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Gaining insights through casual and amusing clinical conversations welcome to 4D, a podcast brought to you by the Degenerative Diseases Special Interest Group of the Academy of Neurologic Physical Therapy, a component of the apta. I'm Ken Vanacco, 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 with neurodegenerative diseases and their caregivers. We will be joined by a member of our DD SIG Liaison team, which helps us gather and share valuable insights from these organizations. And in each episode, we'll also interview representatives from the featured organizations to learn more about the services and support they provide. To understand a little bit more about the resources available to people living with multiple systems atrophy, I'm joined today by Joe Lindahl, who is the CEO for Mission msa. Welcome, Joe, and tell us a little bit more about yourself and your role within Mission msa.
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Sure. And thank you so much for having us. We appreciate the outreach and an opportunity to raise a little awareness about our organization and of course, MSA overall. So I'm Joe Lindahl. I'm the Chief Executive Officer for Mission msa and we are the leading patient advocacy and research foundation serving those that are living with multiple system atrophy as well as those that are researching promising therapies and hopefully a cure at some point. So we've been around for over 30 years. We are formerly known as the Multiple System Atrophy Coalition, and we rebranded a couple of years ago to be more action oriented and focused in terms of where we want to place ourselves and how we can support everyone in the community. So I've been with this organization now for over four years and have the privilege to really see this organization grow significantly over my tenure. And I'm more than happy to talk about kind of what we have, where we've been and where we're headed.
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That's great. That's great. I always think it's interesting to hear your background too, and what brought you to Mission msa. You mind going into some detail there?
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Sure. I think the most common question I get asked is, what is your connection to msa? And I actually am coming into this community kind of untethered in many ways. My background is professional association management. So I have been in the healthcare space helping run mostly healthcare associations, but I've also been in a trade organization as well. And so I think the expertise that I bring to the table is really, I know how to run an organization. I know how to structure conversations, work with boards and governance to set up an apparatus for success. Now, clearly, working with multiple system atrophy patients, care partners, researchers, has been an absolute blast for bladder term. Like it really has been. So something that has resonated with me and that's where I wanted to be when I, when I thought about my next career move. I certainly will always want to support the professionals, the nurses, the physicians that are doing the work and providing the care, but I was looking for an opportunity where I could see a little bit more of the work I'm putting more directly. And I certainly have had that opportunity to do that with Mission msa. Having a more direct connection with those that are going through the journey is really powerful. And so I wanted to feel connected to the community and I certainly have had that, that chance. So that is my, that's my background.
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That's great. Yeah. What a great way to get connected to a community. Right. And. But like you said, kind of also be involved with healthcare professionals that are often helping these folks. So what a great, great way to get involved in that. And then, Lindsey, it would be great if you might introduce yourself as the liaison for, for this group.
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Yeah, sure. So I'm Lindsey. I have been the DD SIG's mission MSA liaison for a little over a year now. Just started that, looking for volunteer opportunities within the DD SIG as being a member for a while. So this has been a good one.
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That's great. Given the. There's probably a large scope of things that Mission MSA does. What do you think are some of the most commonly utilized resources for Mission msa?
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Yeah, I think specifically for those that have been newly diagnosed. I think we most commonly see an immense amount of activity regarding some of our resources. And there's a few that I'll highlight and, but certainly not limited to. The first is we do have a licensed social worker on staff that is available to answer questions through email or actually a direct phone line. And a person may call the line at any time during the workday or actually use an online scheduler to find a time that works best for themselves and for Lauren, who is our social worker, and so she really is there to provide any immediate guidance, provide some direction, because there's a lot of questions that folks are going through that they didn't think they'd ever have to go through. What is msa? What do I have to think about right now? What do I need to think about in six years? Should I go on vacation now? What's physical therapy? I mean, truly, I mean, run the full gamut. And so Lauren's there to really provide a more intimate, direct, one on one conversation to help alleviate and prevent direction. And folks are more than welcome to keep calling back and making sure that they're getting the help and support that they need. We also have online resources available. So through our resource library, we have a wide range of recorded webinars to physical documents. We have kind of an MSA101 guide that's very short in layman's terms that can provide kind of a brief outline of what is the disease, what should I be looking for, what are all these acronyms? We really want to give them a base level set of knowledge. We have webinars that cover everything from early diagnosis to what are some of the new and exciting things we're seeing in the research field. Because a lot of folks that are a little bit further along in the journey, they want to know, well, what's available, what are clinical trials, how do I want a clinical trial? Why are they doing this? So we want to provide a real conversational layman terms connection so that people can have a grasp on, on what is happening. We also have a online community called MSA Connect. And MSA Connect is for those that are, have gone through the journey or maybe their former care partners as well, that want, that can contribute lived experience feedback. I mean, some of this is just we didn't know, we didn't know until we found it out. And it's a very heterogeneous disease. So everyone's experience is also very diverse and different. So we have this online community. You log in, it will look very similar, I think, to LinkedIn or Facebook. And we know that there are Facebook groups out there. The reason we created this is first and foremost we wanted to provide a secure platform. And while Facebook is wonderful and that's where a lot of folks are in there, have usernames, it's not secure and it is a marketing platform. We will never sell any information. It is purely for those living with MSA and it's our proprietary software. We actually released a mobile app not too long ago. And so we're trying to provide more resources inside that platform as well. We'll put out surveys as the organization. Hey, are these webinars working for you? Maybe, maybe not. Is the topic something you'd like to explore differently? Would you prefer a more audio driven format? Would they like to be shorter? Would you like multilingual? And so this is a real opportunity for us as an organization to go out, back out to the community in real time and ask them how else can we best deliver education and support that is actually impactful. So that's really important for us. So I think through those mechanisms is really our patient support. We also just released our care grant which is our respite care program. It's the first time we've ever done anything like this because we know there are individuals and families that are going through this disease and it takes a lot of financial resources and strain. I wish we could provide a ton of money, but the little that we are able to offer we hope just gives a little bit of time and space for our care partners that are going through this journey to have a little self time and avoid a little bit of burnout. So wherever we can. So that's a new program where we just released in February. We hope to continue to see that grow.
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It sounds like there is a large scope from social worker presence. Right. And being able to connect with folks, these educational resources and handouts that you spoke to and then some of these webinars as well. But then that element of connecting individuals within the community because that peer support becomes such a huge element. So what a great opportunity for folks to connect on that secure platform. Speaking to some more of these patient related resources. You had mentioned a little bit about how there's resources for folks early on in the disease. Are there other resources throughout the disease course as well? And what are some of those?
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Yeah, there certainly are. And it could also be found in our resource library. So if you actually went to missionmsa.org and you click clicked on our resource library, you can filter by kind of where we think these resources might be most applicable early to end to the middle of the journey. So some of the topics that we've covered have been around. What's a will? What's the power of attorney? How do I retrofit my house? How do I go through that process? We certainly have topics that we try to address that we know will kind of make sense across the continuum. And I will say a lot of that has in webinar form. But we also, we do have some online written resources as well that are available. And it's also kind of to your point that MSA Connect is also a really powerful place for these conversations to have. I think the, some of the uniqueness of the conversations are really informative for us as an organization. So what can we further explore? But also things we just never would have thought of, like what is the best way to put your shoe on? And people are sending, you know, Amazon things that can like help pull up the back of a shoe. I mean, there is a wide range of really great knowledge inside MSA Connect that we want to continue to build on, perhaps formalize. But I think to your point around community, you know, we kind of jokingly say it's the club no one wants to be a part of.
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Yeah.
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But once you're in it, we're here to support you, make sure you're being connected to people that will make sure you're not alone. Like I would. The most common sentiment is I'm completely lost now. I'm one of one in many instances because most people have never heard of multiple system atrophy. A lot of their PCPs, family physicians, they've never heard of this. And so there can be so many instances where they feel like they are the sole source of energy. They're going through Google, they're going through AI LLMs and just immersing themselves. But I think one of the really important parts is you're not. You don't have to always start from scratch. We're here as staff, we're here as an organization. But you also have a full community that can really help even fill in those cracks as, as you go through this journey because it's, it will be so helpful. You'll feel less alone and everything will be a little quicker. Even like if you can get a resource six months quicker, that matters, especially for this disease. And so I just to kind of piggyback kind of where we were talking about earlier as a resource. We say community. Community is both a resource. It is also a sense of backdrop and support system that I think is so imperative for the MSA community.
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Right. No, so true. I mean, I feel like in working with this population, I learn more from the folks living with the disease sometimes than I can gather from even some educational resources. Right. Like those tips and tricks that people living with the disease will come up with, whether it's dressing or other things around the house that they're having challenges with. Like a lot of times they will find the solution. People are creative and they Find these ways. So being able to share that with other folks and have that, that peer support as well, like you said, that backdrop is, that's great that you have that ability for people to share their experiences.
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Yeah.
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Are there mostly like these online resources that mission MSA does or are there any in person opportunities for people to connect as well?
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Yeah. So we have Centers of Excellence and we're about to make an announcement, but our network will be expanding to 36 soon. Last year we did our first international presence as well. So the Centers of Excellence really did start as a way for us to highlight institutions that provide multidisciplinary care that have knowledge and expertise within msa. That was the impetus for all of this. Because consistently heard from community, I don't know where to go like and I, if I go someplace, I'm being referred for three months out from a service and I can't keep traveling back and forth because many of our patients are traveling quite significant distances to get the care that they need. And so we wanted to highlight these centers to say, hey, these places exist and we feel confident that they will be able to provide that same day or next day referral system in a singular location. That's how it all started. And so part of what they do is many of them provide patient support groups for msa. Some will also be msa, PSP and Parkinson's. But there is a support system there on site. Most of them are in person, but some of them are also virtual. We also have peer support groups. If you went to our website, those are also run generally monthly, but some of them as frequently as weekly. So those are other opportunities. Let's see. Last May, we had our 2025 International MSA Congress. Historically, that congress had been really research centered. This past year, in 25, we decided we wanted to make sure that everyone knew this existed and that everyone was invited. So we purposely brought patients and care partners into our attendee and we created sessions that made sense for them. And so that's another place where we're going to continue to build more of that in person face to face interaction where they can find their community. The next one will be in 2027. Okay, we'll be making that announcement in the next couple of months. We also have Path to a Cure events, which are 5K walking and movements to raise awareness. But we also know that, that it's a valuable space to meet others in your locality that are going through a similar experience. Making those face to face connections is also super important. And so those are also going on throughout the year. We all even have another virtual coming up, actually this, this month. Because March is MSA Awareness month.
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Yes.
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We also have advocacy. Capitol Hill day is happening March 23rd, 24th. This is our second time we've done a Capitol Hill Day. And so far we've doubled our attendance from last year. Another place for us to really bring patients, care partners, industry researchers together as a shared community to advance the needs and priorities of the MSA community. I think all of these events I've just kind of outlined serve probably a specific purpose, but what I do want to highlight is we do try and make sure a sense of community and connection is available in each of these. And so that's something we're trying to be very intentional around moving forward.
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Yeah, it's so great to hear about, like the centers of excellence that you have and getting these folks care early and more, you know, rapidly than if they were referred elsewhere. Let's say, like you're saying all these other in person opportunities to connect it. You know, we definitely expanded sort of our networks. Right. During COVID Right. And we're able to connect virtually, but still there's this value of being in person that it's so great to hear. There's so many opportunities, even this international Congress coming up in 2027 invited to.
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Yeah, cool. Yeah. And we're going to continue to. To see and again listen to what the wants and needs are of our community.
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Absolutely. Maybe. Lindsay, it would be great if you might be able to speak to some of the resources that you have found through Mission msa.
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I think Joe highlighted a lot of the resources already, but some other ones would include, you know, as a clinician, if you're working with a patient with msa, they have really good handouts that you could quickly pull up in the clinic to say, hey, you've got this new diagnosis, or maybe you have this diagnosis that we need some more education on. So things you could pull up really fast within the resource library, print out and hand to them. Some examples are they have a handout on autonomic dysfunction stages of msa. There's a carer's guide so, so structured for just education for the care partner and maybe having some forethought and thinking about how am I going to prevent burnout for myself, but also support my person that I'm trying to help. So there's a lot of great stuff there that I think as a clinician would be helpful. There's also stuff meant for patients as well as for providers too.
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Yeah. As a clinician, I love those quick printouts for patients. Like we of course have all these conversations with patients, but then being able to have something that they can go home with and say like, oh, you know what, what was Ken saying again in, in my session? It's just such a good thing to go back to and maybe hits upon like some of those like really important points. Um, I love the autonomic dysfunction shout out too. Like so common in this population unfortunately, but such a huge thing maybe to highlight. And also as an educational point that we can bring home for these folks in terms of educational resources for therapists. And how might a therapist get connected to those webinars? Is it something they could sign up for?
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I can start on this one. So if you just go to mission msa.org resource library, it takes you right to this page where you can filter through like brochures, which is where you would find that autonomic dysfunction handout or stages information. But they have all the webinar recordings, videos. So as a clinician, if you had a patient with this diagnosis that you had never seen before, don't have a lot of experience with, you could easily get kind of clinician level information there and then also patient level, all in the same place through that resource library.
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Right?
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Yeah. I would also just add MSA Connect is for anyone. So we have many healthcare professionals that are in MSA Connect and we do have separate groups for our coes that exist in there. I think our longer term plan, again listening to our community, is is there a place where we can gather folks of like mindedness to make sure you all have a space to connect? Because I think in many of these other care areas, everyone's doing the best they can with the resources they have. There is no gold standard, There is no best care per se in many instances. And so we're always thinking about how can we support our clinicians that are seeing these patients to make sure that you too have some evidence, some review guidelines, whatever that might look like in the future to help support your practice. Because I can only imagine seeing your first MSA patient. You perhaps have never seen this condition before and so what's next? And I always think about that because we know our folks are seeing X, Y or Z first and we're trying to make sure that this condition is more known and if not mastered, that's certainly not the expectation, but understood enough to accelerate a referral or some sort of semblance of that. So that is something that I would just know like MSA Connect is for all. We also have a newsletter so you could always sign up. And we share everything monthly from advocacy, things we're doing on the Hill, to research papers that are coming out, to clinical trials and everything in between. So it can be applicable if you just want to have a simple light touch pulse on what it is we're doing as an organization. Those announcements, it's easy to sign up.
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That's great. I'll be signing up for that right after this call. It might actually be helpful, Joe, if you might be able to speak to like, what are maybe some of those initial symptoms of msa? Like what are some of the common things that you're hearing? Because it is a rarer disease. You know, it's a cousin to Parkinson's. Right. It falls within the Parkinsonism family. But again, maybe not everyone has seen it. So would you be able to touch upon some of that?
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Yeah, I mean, I think there's certainly been some literature about some of the most common symptoms that we'll see in terms of their emergence. It, you know, if we're talking about just what I'm hearing and seeing.
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Yeah.
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For offhand, it really is very diverse. I mean you touched on it earlier. Autonomic systems are one of the first tell signs. We're thinking about differentiation between ourselves and Parkinson's disease. We, we know that it's most commonly misdiagnosed as Parkinson's. And so when it goes through that process and we're going through a therapeutic where carbidopa, levodopa is no longer working, that's the normal sequence of events. There's certainly others, sleep disorders being one. The tricky part here is that one the misdiagnosis and the dream to an accurate diagnosis. This is a tough disease to accurately diagnose. Absolutely. Like there's a lot of challenges with this of how it presents and we do not have this biomarker test that can just say that you have this. We have no real genetic marker that we can point towards either. It's a challenging piece. The community has done a better job of pulling in different features to examine. And I think with the new diagnostic criteria in 22, we have seen a rate increase of where the batting average has gone up. That's great.
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Yeah, that's good.
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But I think it becomes you're still looking at a two to three year space on average based on our own internal survey of where you're getting an accurate diagnosis. And as you know, with the symptoms onset to end of life, that's a long time.
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Yeah.
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So unfortunately, the first symptom, you're asking someone for the first symptom, they may not be able to tell you by that point. It is a significant, significant challenge. So I think it, it's certainly part of what we're focusing on is how do we get that better earlier diagnosis, which I think everyone is constantly searching for. And because it is a rare disease, you know, we, we throw out and us and the NH, you know, 15 to 50,000 individuals in the United States are living with multiple system atrophy. That is a huge, huge range.
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Right.
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I believe our ALS counterparts are around 30. We're certainly in that hemisphere. And it, I think it comes back to, again, awareness. People need to know about this disease as even being a potential clinical diagnosis and then providing a little bit better education. So, yeah, kind of, I think it is a challenge. Yeah, it's a tough disease.
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It is such a challenging disease. And you know, just based on my own experiences too, there's like this Parkinsonian features that can present. There are also these cerebellar type of features that we can see too. And to your point, like highly variable. And that can make it one of the more challenging things to diagnose. Maybe Lindsay, too. Would you be able to comment on, like, screening for MSA as a physical therapist?
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So what I would be keeping in mind is you have a referral in outpatient for Parkinson's or falls, and that person's coming in. And the things that would maybe tip you off towards maybe having that differential diagnosis of MSA in the back of your head would be some significant orthostatic hypotension and that supine hypertension. So you're getting that really high blood pressure laying down, and then it's dropping a lot. So maybe that person's having lightheadedness, falls, passing out. Urinary incontinence would be another feature. Some speech or swallowing issues, typically that is not as prevalent in Parkinson's or is very much later other than the hypophonia. But, you know, more that swallowing difficulty and just falls, being early in the diagnosis would be making me think maybe we need to talk to the neurology team. Or if they're. They just got put on some Parkinson's meds, or they've been on them for a little while, but they feel like they're just not doing anything to help them.
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Right. No, those are some good points there. And of course, like, we end up seeing these folks a little bit more frequently than our neurologists do just based on, you know how we're treating and helping to improve their mobility. And so it happens so often that we see this like we kind of pick up on these signs. And so that communication can just be really helpful knowing now that it's rare, it's such a challenging disease sometimes to treat and identify. Joe, you had mentioned a few initiatives by Mission MSA regarding research. Would you be able to speak a little bit more to maybe some of the different research initiatives or focus through Mission msa?
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Yeah, yeah, I certainly can. We've historically provided seed funding and the whole idea is we provide a little bit of money for a researcher that might ultimately go on to a larger grant, such as an NIH grant. We've been doing that for quite some time. CND, where the skin biopsy ultimately came from, a 2013 C grant from us. We've continued to grow and being more strategic around how we want to integrate ourselves, I'll say, into research. We're a small 501C3. We do not have millions of dollars to give, though someday, hopefully we will. So we have to be strategic and think about how can we pool our resources in ways in directions that we think may be the most promising. Understanding the same end result of going through to a larger grant will have to be the goal. So we've gone through strategic planning. We've actually gone through our second. And I can tell you one of the things that we're really focusing on is decreasing time to an accurate diagnosis so that lives in a pillar. Another one is supporting an active clinical trial pipeline. These are two really distinct ways that we feel like we as a the patient advocacy organization can support these two things. And research funding is certainly one of them. So what we've changed, we've actually provided what we're calling a cures grant to our COEs. So now that we have a large network, we wanted to provide a larger funding available so that these institutions are working together on a shared research goal. We require them to work together at least three from diverse geographic areas. And we identify what kind of what areas we're most interested in. And they both live under these two pillars. And so we'll be making those that announcement the next couple of months of which institutions receive the support and what the projects are. But we're really excited because we give them hopefully enough funding to do an exploratory examination experiment, go through the process for two years, and we hope to have a really positive result that we can again push forward through to the NIH or another larger funding mechanism with the number of patients. When we talk about recruitment, when you talk about shared knowledge, there really is a significant benefit to working collaboratively together. And so that is one of the things that we wanted to make sure we were helping to facilitate. And so the other thing that we haven't released notice of, but we will be making an announcement on the next couple of months, is we are actually doing our own natural history study and patient registry. So we're really excited about this initiative because we feel like as a patient organization, we should be seeing and we are kind of neutral where all the information is accessible by those that really want to explore msa. Patient experience, caregiver burden, all the things having access to the data to really be an accelerant to research. So more news will be coming in that I would say early June is our target date. But that is something that we as an organization be more hands on with generally has been funding, but now that we brought on more staff with different expertise and backgrounds, we feel like there's some things that we can do. Even a small organization that I think can help the community in this arena. So very excited about that.
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Yeah, that is very exciting. Congratulations on getting that going here. Yeah, it seems like smaller organization, but you're the start for a lot of these, like, larger projects. And definitely it seems like we can direct patients to the website to kind of explore some of the research opportunities available through. Through Mission msa.
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Absolutely. Yes. Yes.
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Anything else that you wanted to say, Joe, about Mission MSA or any resources that we didn't touch upon yet?
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I would say please consider following us, using us as a resource, sending us a note if you have an idea, because we're very much in flexibility and entrepreneurial mode where we want to support those that are supporting our patients.
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Great. Great. Well, I bet we'll have some interested audience members or podcast listeners, so it's very cool to hear all of what you're doing. I have one last question for you though, Joe and Lindsay, as we have a tradition here on the DD Sig where we ask each of our guests what they like to do outside of work.
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I have a three and a six year old, both boys. And so I would say a majority of my time is running around being a human jungle gym. Yeah. Watching them play sports. But I wouldn't have it any other way. It's absolutely the best if I'm not. I'm not trying to be a dad. I'm a very recreational guitar player. I enjoy a good run. Trying to get back into running. I'm like I'm 40. This is a great time just to kind of get back into it. And so between that, that's. That's basically all I have time for.
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Very cool. Very cool. Thanks for sharing that. And then, Lindsay, what is it that you like to do when you're not working?
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I love anything outdoors, so hiking, camping, running, biking. We did ice fishing the other weekend, so anything and everything outside. Yeah.
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Wow. Very cool. All right, well, really appreciate you joining us. Yeah. This has been such a great conversation.
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Thank you for having it.
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A
Thanks for joining us. Special thanks to our guest today, Joe Lindahl from Mission MSA and our DD SIG liaison, Lindsay Beatty. 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. This podcast was produced and edited by the ANPT Degenerative Diseases Special Interest Group podcast team. For more information on the SIG and the AMPT, visit www.neuropt.org. our podcast team includes Sarah Zoller, Christina Burke, Karm Padgett, Shannon Brown, Madison Catalano, Aisha Sonani, and I. Kempenaco. Thanks to Jimmy McKay for providing music and please share this episode with a colleague today. Next. I'm just taking a look at my questions here.
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So we'll see how my back holds up, my hip flexors, because those are the things that really hurt.
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But
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that is my hobby.
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Sorry, I didn't know you were the liaison. That's my thing.
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That's okay. How would you know? I thought it's my fault. I like I never warn Ken. Who's coming on?
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I'll catch you soon.
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Sounds good. Go run.