← 4D: Deep Dive into Degenerative Diseases - ANPT
4D: Deep Dive into Degenerative Diseases - ANPT
DD SIG Navigating the Path Episode 6: The Muscular Dystrophy Association
00:29:28
In this episode, host Ken Vinacco talks with guest Brooke Smith to learn more about the resources and role of the Muscular Dystrophy Association. The Degenerative Diseases Special Interest Group is part of the Academy of
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- [00:01]
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. Welcome to 4D Deep Dive into degenerative Diseases, 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 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 we introduce our listeners to an organization that supports people with neurodegenerative diseases and their caregivers. We will be joined by 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 with muscular dystrophy, I am joined today by Brooke Smith, Senior Director for the Resource center through the Muscular Dystrophy Association. Welcome, Brooke. Tell us a bit more about yourself and your role within the mda.
- [01:32]
B
Hi Ken, thank you for having me on today. As you said, I'm the senior director of MDA's Resource center and we are the group of people who will answer the phone, answer emails when anyone, any of our stakeholders call in or contact mda. So really it's that front door, the group of people who are there to listen, to, answer questions, to connect, connect either our professional community or our patient community to the resources that they're looking for.
- [02:06]
A
That's great. And from what I know about the mda, there are a lot of resources that you offer, both support for people living with the different muscular dystrophies, but also there's different financial resources. And could you dive into maybe some of the most widely used resources that people are, you know, looking for?
- [02:28]
B
Absolutely, yeah. So it depends on who it is that's reaching out to us. So if it's our professional clinician or healthcare provider community, then it could be resources on the different treatments that are offered, symptom management, things like that that might be helpful whether it is around insurance, navigation, different guides that we have that may be helpful for our healthcare professional community to be able to serve their patients. Also we have those resources, but we also have quite a bit of resources for our patient community. So again, those guides that I was talking about are also helpful for them. We have some around caregiving, transitioning to adulthood is a big one that we get. We also have ways for people to connect. We know that connection is important and powerful within our community. And so we want to provide pathways for people to connect to MDA and then to also connect to each other. So we have a few different ways that we can help people connect to others within their community, whether that is through some virtual support groups or connecting peer to peer. So with someone else who is kind of walking that same path that they are, when they're a little bit ahead or a little bit behind in that journey, it's always nice to have someone that you can talk to about what's going on. We do have a durable medical equipment grant program that we launched earlier this year. We have heard from our community over and over that there's so much equipment that they don't have access to, whether it's an insurance barrier or just out of pocket cost barrier. And so in listening to our community and knowing that this has been a challenge to their independence, which is, you know, part of our mission is to empower people to live longer and more independent lives. And so in support of that, we have started a durable medical equipment grant program. And so we've really seen life changing results from that already. Just in the short few months that we have offered that.
- [04:49]
A
Yeah, I've, I've had a couple patients already utilize that service and I think it was like a pilot program for a little while. Right, and so such a great resource that you're able to offer. Yeah, so great. Could you speak to it a little bit more like what kind of equipment is available for folks?
- [05:07]
B
Yeah, absolutely. You know, we had planned to pilot it, but then we quickly decided that it was something we needed to offer nationwide. So we actually never piloted, we just just jumped right in. So really we're looking at equipment that families are not able to access through other means. So their insurance isn't covering it, it's not covering the full amount. And there are different barriers standing in their way to what they need. We're looking at, you know, mobility equipment.
- [05:37]
A
Like different wheelchairs, maybe like different assistive devices that like are cost barriers sometimes. Right? There's.
- [05:45]
B
Absolutely, yeah. So we've done a few manual chairs just to help our members get out into the community. Some scooters to help them get out in the community when that's not their everyday assistive device, but something that can help them experience life and, and enjoy the things that they have always enjoyed. Some other things, aids to daily living, shower chairs, Things like that.
- [06:12]
A
Yeah, no, that's huge. And of course, like, saving energy throughout the day is such an important factor and energy conservation for these folks. So everything that you're speaking to, I think will help someone to be more independent throughout their lives. So going back to the support groups, because I also have had some patients who have loved those support groups. Are those available to anyone? You mentioned their virtual programs. And are caregivers allowed in those support groups, too?
- [06:42]
B
Yeah, so our pediatric support group is for caregivers, so I'll start with that one. That one is mainly for parents or other caregivers of pediatric patients. We do let the person diagnosed attend those if the parent feels like that's an appropriate setting for them. So it's kind of up to their discretion. The other groups that we have are adult nurse neuromuscular groups and an ALS specific group. And those we try to keep to the patient if they're able. We know, especially with that ALS group, that sometimes they have to have a caregiver present, but really we leave that up to the individual on whether or not they have a caregiver. But really we're trying to focus on supporting the individual living with neuromuscular disease in those groups.
- [07:37]
A
Yeah, no, that's great. And it sounds like they're really inclusive to all different types of muscular dystrophies. And you mentioned the one specific for als, and of course, that being different process than most muscular dystrophies. So I can see the importance in having that a little bit separate. Yeah, it's really great that those programs exist. How does someone find them? You know, where. Where are these. These resources and support groups found?
- [08:05]
B
The best way to find these support groups and resources would be to reach out to the resource center. So really that's our role, is to listen to your story, listen to those things that you're looking for that you need, and connect you into the right place. One of those being these support groups and other resources. So feel free to reach out to us, and once we get your information, we'll send you a link to join. It is a private group, so we do share that link with people who are interested. But it's not the link to join, it's just not on our website. But there is an interest form on our website. So if somebody finds us or finds the community groups, that way they can fill out an interest form. And then once we're able to assess that the group is all right, fit for them, then we'll share that link to join.
- [08:59]
A
Yeah. Oh, that's, that's great. Yeah. So there's a way at least to find it. Fill out an interest form to get the information.
- [09:06]
B
Yes. And those. Right now those groups are meeting monthly. We're constantly polling our group members and asking the community what works best for them. So at this moment they are monthly, but we're always looking to see if we need to add another one at a different time and those sorts of things.
- [09:24]
A
Yeah, no, that's great. Yeah, I can definitely see the value in those. And are they mostly regional? Like, are there like or based off of centers?
- [09:35]
B
They're not, they're just open. So it really. You could be in a group with someone near to you or far. We're really looking for the shared experience on that and not necessarily geographic. I will share that. We do have the peer connections program and so that could be more geographic. That's where someone would connect one on one with someone. And when we do that intake, we are able to ask in that what people are looking for? Are they looking to connect with someone who has the same diagnosis as they do, Someone who is relatively around the same age as them. And then we do ask about geographic location, if that's important to them because we know people like to meet in person at times also.
- [10:22]
A
Yeah, that connection can be helpful. That, that's great that that peer support program also exists. That's really nice. For folks living with muscular dystrophies who like are looking for more information about their specific type of muscular dystrophy. I've seen some resources on the MDA site. Can you speak more to those that are available for people looking to learn more?
- [10:49]
B
Yeah, if you're looking to learn more about your specific diagnosis, we do have disease fact sheets for some of the more common diagnoses. We don't have it for every diagnosis that we cover because some of them are so ultra rare. But for the more common ones, we do have those fact sheets on our website that you can access. If you're looking for information on some of the more ultra rare diagnoses, feel free to reach out to the resource center and we can help pull that information. There's also information on our website around research. We can also help pull research articles specific to a diagnosis. And then a lot of our webinars and virtual learning are disease specific, but also just daily living kind of things as well that might span across different diagnoses.
- [11:43]
A
That's great. Yeah, I know for my patients I'll hand out a lot of those fact sheets, but also for myself When I see a diagnosis that maybe I'm not as familiar with, I found them super helpful. Just for. As a starter or entry point to learning about it.
- [11:59]
B
Absolutely. I still find myself registering and listening to our webinars and looking at those when they're updated. It's a great way to stay on top of information and just learn. You know, research is, is constantly adapting and changing and growing. And so new things are, are happening in the field of neuromuscular medicine daily. And so it's a good way to kind of stay up to date with what's going on in the field.
- [12:26]
A
Yeah. How does someone sign up for one of those webinars and are those mostly geared towards patients or are there like other educational offerings for clinicians?
- [12:36]
B
Yeah, that's a great question. So we have both. We do have webinars that are geared towards our patient community. So that would be how to live life with a neuromuscular disease. I still find those really educational. I think we learn a lot from our community and what interests them. But we do have a medical education that we host. So there's a couple of different ways you can always call us and we can share that information. As far as healthcare professional education, that medical education, if you look on our website, which is mda.org There's a science and research section. It has medical education where you can find our webinars there that are more geared towards the healthcare provider community. There's a lot of past webinars that are there that you can look at disease specific webinars and learnings. And then you can also sign up for a monthly newsletter there that will give information that I find very helpful for this community. So that would be a great resource to continue learning and staying up to date. I will add, because I know this is important. Some of those are also accredited so that you can get continuing education. There's no cost to do those. So I know that that is helpful a lot of times to the healthcare provider community. But attending these webinars are at no cost to our families or to our medical community.
- [14:15]
A
Yeah, I mean, that's huge. I feel like as someone who's looking for some of those CEUs to get opportunity to have some free continuing education hours, that's even better. But yeah, this sounds like there's a lot of different virtual offerings for education for clinicians. Are there any like in person conferences that the MDA hosts too, for folks who are like within that community?
- [14:40]
B
Yeah. So we host a clinical and scientific conference every spring. It's typically Been in March geared towards our healthcare provider community and it's a great turnout of researchers, physicians, allied health care professionals in their different tracks based on kind of interest area and area of practice. That agenda for 2026 is already on our website, so if anybody is interested. It's a great, great conference, very highly attended and so I'd recommend anybody check that out if you're interested.
- [15:19]
A
Yeah, I almost went last year. I saw some great educational offerings for like rehab professionals too. And it's definitely some good content for, for pts that might be listening here.
- [15:33]
B
Yeah, you should check out the agenda. It's out there. So I know, I know that we're working on it behind the scenes, so I've gotten a little preview on it. It's going to be great.
- [15:42]
A
Very good. Very, very good. For those folks who are looking to get more involved within the mda, like, are there opportunities there as well?
- [15:52]
B
Yeah, one that we're looking for right now is we have a mentor program that usually starts towards the end of the year, but we have opportunities throughout the year. So the mentor program is really a chance for anyone in our community to partner with someone who has neuromuscular disease and they work either in small groups or one on one to learn from each other. And so that's one way that someone could volunteer. We have a lot of virtual programs. We have virtual camp and other ways that people can help support our community. And then we also have in person events across the whole United States. So whether it is a fundraising event such as a muscle walk or a gala or a golf outing, we have opportunities there. And then we also have in person community events. So in person opportunities for people to connect with each other. Always looking for volunteers there as well.
- [16:58]
A
Yeah, yeah, sounds like a lot of opportunities there. Those can all be found on the website. If someone's wanting to sign up or call the resource center, is that the go to?
- [17:09]
B
Yeah, absolutely. That's probably the best way. We do have our events listed on our website, but you can call the resource center and we can connect you to something in your area.
- [17:20]
A
That's great. That's great. And for people living with muscular dystrophies, I know there's a lot of different, like multidisciplinary clinics or centers around the country. What's the best way to get connected to one of those?
- [17:37]
B
Yeah, we have over 150 care centers across the United States. And so the best way to get in contact with one of those is we do have them listed on our website. You can go and Find our care centers and find contact information there on our website, or you're welcome to give us a call or email and we can share that information with someone that way.
- [18:01]
A
And are all those care centers similar in nature? Like, do they have the same professionals within the clinics? I know what we have at Brown University Health, but I can imagine there can be some differences from clinic to clinic.
- [18:16]
B
Yeah, there definitely are some differences from clinic to clinic. It may depend on how many patients they see annually. It may depend on what specialists they have available. But the majority of those are multidisciplinary, where they would have a neurologist in clinic, they would have some sort of social work or psychiatrist, neuropsychiatrist, sometimes available. And then PT or OT would be available in those multidisciplinary clinics as well. So it does, it varies from site to site. But the nice piece of that is that someone could come to clinic and potentially see their pulmonologist, their cardiologists, their neurologist, their, you know, pt, ot, all of it, all in one visit, all in one room. And so they're not having to make multiple trips back and forth for multiple doctor's appointments throughout a week. So it makes it a lot easier for people to just make one trip to the clinic and see all the providers at one time.
- [19:19]
A
That's, it's so great. I know folks love coming to clinic. It's like one stop shopping. But what do you recommend for connecting people who are newly diagnosed with muscular dystrophies?
- [19:31]
B
Yeah, I will say one of the greatest things that we have that maybe isn't utilized as much as I would hope is we have a next step program. So it is kind of that I would just diagnose what is my next step. They are virtual, but they're small groups so that people can build trust and ask the hard questions when they are newly diagnosed. And some of the different seminars that we offer in that are for newly diagnosed adults, newly diagnosed pediatrics, newly diagnosed als, and then also transition to adulthood in that. So really those are, I was just diagnosed or I'm just now moving from pediatric to adulthood. What is, is my next step. And so through those, we really try to help them answer those questions and connect them again, it's all about connection, but connect them to others in their community who are kind of experiencing the same thing.
- [20:26]
A
Yeah, yeah. That is so great to have like individual different seminars or options there, depending on what someone's need is. Especially that transition to adulthood. That can be a really hard transition. I've found, at least for some of my patients. So having some guidance and like, what medical treatment looks like, what like their social life will look like now to what it could look like. Such a great offering that you have there.
- [20:54]
B
Yeah, I think we have found that we get a lot of people who call and email in and contact us around that transition to adulthood because so much changes. They're used to their parents taking care of their medical appointments and scheduling them, insurance changes a lot of times around that. And then, you know, with people going off to college or living on their own, they are thrown into this world of, you know, finding caregivers or, you know, navigating their own world where oftentimes they've had a caregiver or parent who's have done that. So I'm really proud of the work that we've done around that transition to adulthood just in recognizing that it is such a difficult time in life to figure out. And there's a lot of support that's really needed around that, I will say for both parents and the person moving, transitioning, definitely.
- [21:55]
A
No, it sounds like there's a lot of good recommendations that you can find through that, that peer or that support group there. Very good. Anything else you think that we missed that we should highlight that the MDA does?
- [22:09]
B
Yeah, that's a great question. I will say our research and investment in research has been something that I'm really proud of. The things that have come out of that, the new treatments that have come out of that. We just saw a new treatment that was approved, that MDA played a role in the beginning stages of that. So I'm, I'm really proud of the research that, that we support. And a lot of that comes out of and is announced at that clinical and scientific conference that we talked about. So it's a great way to learn. You know, we've invested more than like $1.1 billion in neuromuscular research, which is a lot. It's just nice to know that we're caring for. For families and individuals in the here and now and what they need today, but also investing in research for new treatments and kind of what's to come in this area.
- [23:08]
A
Yeah, that's really great. Of course, that's sort of the, the next step, right, in treating these individuals and advancing the medical treatment being so important. So. And, and yeah. Anything else that you'd like to share about the. The mda?
- [23:23]
B
Yeah, Ken, I wanted to share. So we have a MDA summer camp across the United States, and that is a no Cost to our families. Week long summer camp experience. It is for kids who are age 8 to 17 and it is a full week sleep away camp where all of their medical needs are taken care of and they get to just come and be kids. And so we have s' mores and we have zip lines and swimming and canoeing and all the fun things that summer camp offers. And it's a great way for people to volunteer. So if anybody is interested, it is also a great way to get hands on experience with our community. I know especially if for people who are in school or looking to be a physical therapist, they don't always get that hands on experience until they're in their clinical rotations. And so it's a great way just to be exposed to our population and have a lot of fun. And so like I said, those are across the United States. Our locations usually are announced mid November and registration runs until a couple months before camp. Just because we need to be able to get everybody cleared and assigned to the right place at camp. But it's a lot of fun. I would recommend anybody who has a week out of their summer to join us at camp.
- [25:00]
A
That's great. Thanks for sharing that. And yeah, definitely a good opportunity for some of our younger patients that we see. I think one of the last questions I want to ask too is more about specific recommendations for healthcare providers seeing this population.
- [25:16]
B
I think the thing that we hear from families the most is they don't always feel listened to. And I think the thing to remember is that these families and the parents and the caregivers are the experts in this. Even when it comes to kind of their physical therapy, their abilities, they know oftentimes what they can do and what fatigues them, what hurts them, how they like to be lifted, how they like to be transferred. And so I would just say listen, ask them, you know, what works for them. And it may be that they like to be transferred a certain way, but that is causing pain, you know, for their caregiver, it's causing them pain when they're being lifted or transferred in a certain way. So really just listening to them and working with them to kind of meet at a place that may not be textbook, but that really helps promote their comfort and health overall.
- [26:22]
A
Yeah, I think that's such a great reminder, Brooke. I mean, so important not just for people living with muscular dystrophies, but a lot of the patients that we see, like they're living with this day to day and they, they have these challenges and have really developed great strategies to manage the. Some of the symptoms that they have specifically with muscular dystrophy. It's amazing the strategies they develop.
- [26:46]
B
It is, it is. It's really incredible.
- [26:51]
A
Well, thank you for sharing that and sharing all the information on the muscular dystrophy Association. I do have one last question for you though. It's really a tradition that we have here on the DD SIG where we ask each of our guests what they like to do do outside of work.
- [27:08]
B
Yeah, I have a 9 year old and 11 year old boy, so I will say they keep me busy outside of work, but between sports and school and everything else, they. They really keep us busy. But you know, anytime we're able to get outside and just enjoy, you know, being outside, being with family, that's probably the best.
- [27:35]
A
Yeah, no, that sounds great. I know you must, you must be busy.
- [27:39]
B
Yeah, it's fun.
- [27:41]
A
Well, thank you so much for coming on. This was great to learn more about the mda. I definitely will share this with my patients and also different clinicians too. I think there's a wealth of information here that you talked about.
- [27:56]
B
Yeah. Thank you.
- [27:57]
A
Thanks for joining us. Special thanks to our guest today, Brooke Smith from the mda. 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 AMPT Degenerative Disease Special Interest Group podcast team. For more information on this sig and ampt, visit www.neuropt.org. our podcast team includes Sara Zala, Christina Burke, Karm Padgett, Shannon Brown, Madison Catalano, Aisha Saunani, and I'm Ken Binocco. Thanks to Jimmy McKay for providing music. Please share this episode with a colleague today. Let me redo that.
- [28:56]
B
I may have to redo that. I don't know.
- [28:57]
A
I need to double check and I don't know, management didn't like me being out of work that long.
- [29:03]
B
My boss would be like, what are you doing? I'm so sorry. Can you hear my dog barking?
- [29:11]
A
No.
- [29:11]
B
Good. Because she never barks.
- [29:16]
A
You're good. I was telling Sarah I'm having like my driveway put in behind me right now, so it's wicked loud for me. I need to step out for one moment. The people doing my driveway.