← 4D: Deep Dive into Degenerative Diseases - ANPT
4D: Deep Dive into Degenerative Diseases - ANPT
DD SIG Navigating the Path Episode 4: Huntington’s Disease Society of America
00:28:34
In this episode, host Ken Vinacco talks with guest Gia Mannone to discuss the resources that the Huntington’s Disease Society of America (HDSA www.hdsa.org ) offers for people with HD. Gia discusses events, ways to find specialized medical care,
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- [00:02]
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 the 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. 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. In each episode, we'll interview representatives from the featured organizations to learn more about the services and support they provide. 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. To understand a little bit more about the resources available to people with Huntington Disease, I'm excited to be here tonight with Gia Mennoni, a social worker of the Greater New York and Long island area with the Huntington Disease Society of America. Gia, great to have you on tonight and could you tell us a little bit more about yourself and your role within the Huntington Disease Society of America?
- [01:36]
B
Absolutely. Thank you so much for having me. I'm so excited to be here. So I am the Greater New York and Long Island Chapter social worker. I have been in this position now since September 2024, so I'm new to the position. Really, really excited to have taken on this role. However, I have been member since 2012, so I've been very active in the Huntington's disease community since 2012. It's very near and dear to my heart as I also have relatives that are battling the disease. So it just was perfect timing to jump right in and start working in the HDSA space as well.
- [02:21]
A
That's so great and so challenging. I can imagine having family members in this situation, but I'm sure you come from such a great place of understanding and knowledge with that, so I'm sure your patients really appreciate all that you do. So thank you. So it seems like you've transitioned more recently within the dsa. What kind of role do you play now? You know, in your current role?
- [02:47]
B
Yeah. So in this current role, I am basically able to meet with individuals in the Greater New York and Long island region. So anyone in that region or area that is seeking support or resources, I am their go to HDSA does have a helpline, so individuals could call that helpline. It is nationwide. So they do filter any calls that are within my region over to me. And I'm able to support those individuals in any which way that they need. So that might be connecting them to care resources like physical therapy, occupational therapy, speech therapy. HDSA does have Centers of excellence all across the United States. And it's my job to make sure that they're connected to the Centers of excellence in New York, which are Columbia University and Stony Brook University. So making sure that the individuals I come in contact with are aware of those centers. They have a team full of individuals who are going to work with those families who have the experience right there in the center of Excellence, who are working with Huntington's disease patients. So as soon as someone does go to a center of excellence, they're automatically connected with speech pathologists who are working in the space, physical therapists, the neurologists, genetic counselors for anyone else in the family who, you know, is still living at risk and might think about getting tested. So they're automatically connected to all of those professionals as soon as they walk through the door of a center of excellence. I am also running two support groups. So one is specific to caregivers and the other one is for general education and for any community members at all. So it could be someone who has a friend who has Huntington's disease and maybe wants to learn a little bit more, just get support in a different way. So really being that liaison between hearing about the disease and maybe contacting HDSA and then being that more local support for individuals in the region, that's great.
- [05:05]
A
And it sounds like, yeah, very region specific to greater New York, Long island area. If folks are looking to get connected to their. Their local liaisons and social workers. Is there a map or a list of the different Centers of Excellence to try and get in contact with them?
- [05:24]
B
Yes, absolutely. So on HDSA's website, which is just hdsa.org they have those maps exactly like what you're saying, where individuals could go on and search even events that are happening in their area. So they could find events, they could find their centers of excellence. They could even find social workers on that map as well, which is a really handy tool. There is a finder on their website, and then they could search wherever they need and get in contact with those individuals as well as specific neurologists. So they do give other resources on their website regarding, you know, neurologists who are specialized in Huntington's disease care.
- [06:11]
A
That's great. And in addition to that, I mean, it's so great to have that map of providers. And it sounds like you can help folks get connected to like, other allied health professionals too. Are there lists or maps of PTs, OTs and speech therapists that are associated with the HDSA?
- [06:31]
B
That's a great question. So that is actually up to the chapter social workers. So being in this role, I am currently actually working on a resource guide. So I am putting together a whole resource guide of trusted, well respected resources out in my community. So I'm constantly speaking with community members that are in those roles. So professionals, medical professionals, reaching out to them, seeing if they've ever worked with anyone that has Huntington's disease that way. I could best refer the individuals who are coming to me.
- [07:08]
A
That's great. Certainly sounds like you have your hands full and are doing a lot to help the organization and those folks living with Huntington disease.
- [07:17]
B
Yes.
- [07:17]
A
You'd mentioned the support groups that you're doing, which I know patients and their families have found so helpful. Just from personal experience. Can you tell us a little bit more about what those support groups look like and sort of. Yeah. How folks interact within them and any value that they find from them?
- [07:38]
B
Yeah. So our platform that HDSA uses is called hey Peers. And that is how individuals register for our support groups. And that platform holds all of the support group registrations for every HDSA social worker across the US So they could find their region and then find the support groups that correlate with where they're located. At the same time, HDSA does have national support groups as well that are all virtual and they do make them very specific. So there are support groups that are for HD diagnosed and symptomatic. There is for HD positive, not yet symptomatic. There is a support group for gene negative for At Risk, and they even do a breakdown for youth as well. So I know I'm going on a tangent, but one thing that I think is super, super important is that HDSA has a really big focus on youth. So they have a, I guess, sister organization that's just like a branch off of the national organ called the National Youth alliance or the nya. And that organization is all about youth who are impacted by Huntington's disease. At the national convention, we have NYA Day where all the youth who are attending convention could come together and be around other youth. So it is just so great that HDSA is able to have resources for adults, but also for children and young adults who are going through this Right.
- [09:25]
A
Expose at a younger Age. Right. And having the resources for, you know, more the duration that they're affected. That's such a. Such a great thing. In terms of social work, how does it typically work in terms of getting access to these resources?
- [09:43]
B
Yeah. So one way would be just by utilizing the hdsa.org website and using that local finder map and contacting whatever social worker, you know that is within their region. That helpline is also a really big way that individuals get connected to HDSA social workers. I know they also have email, and we all have our own HDSA emails and phone numbers that any community member is really open to, you know, contacting us however they see fit.
- [10:19]
A
In terms of resources through the hdsa, what is most widely used among patients and families? Like, yeah, what. What kind of resources exist that people really gravitate towards?
- [10:34]
B
There are so many, but there are definitely ones that people love the most, and those are HDSA events. One thing that HDSA does right is, is our events. We. I mean, we do a lot of things right, don't get me wrong. But our events are amazing. So we start with local events. So, again, across the nation, different communities and different chapters and affiliates are doing these events. But speaking to Greater New York and Long island, we have a Team Hope walk every single year. We do the walk, we do raffles to raise money, we get vendors to come, and that. That way, community members who are there are already being connected to cares. So that's one really big event. But another local event that we do is HD Education Days. So this also happens annually. And what we do is we spread the word. We have people come, and it is just a day full of education. So we have different speakers that come. We really try to get creative with who we have speaking at these events, and we order food for everyone. It's just a great time to just see who else is in your community that is kind of, you know, battling the same thing at home. So those are two local events. And then on a more national level, we have, every single year, our HDSA national convention. So what this is is one huge gathering of individuals who are affected by Huntington's disease coming to one space. And it's a weekend, like a long weekend, and every single day is jam packed with education and support. So you have everyone from researchers who are, you know, in the labs working on clinical trials. You have neurologists, physical therapists, occupational therapists, speech pathologists, genetic counselors. You name the profession. If they have anything to do with Huntington's disease care, they're there. So it is completely interdisciplinary, which is great. So you're learning from those professionals who are seeing it firsthand, but then you also have the families there who are, you know, battling this, going through this, seeing it every single day in their own homes. So not only are the community members learning from the professionals, but the professionals are learning from the community members, which it's just so great. So they're holding presentations from HD101. The very basics to, you know, where are we at in clinical trials right now? The way more complex conversations and everything.
- [13:43]
A
In between sounds like, like that probably attracts a whole host of individuals. Like you're saying, from 100% living with the disease to like you're saying folks in the lab and medical professionals. That sounds like such a great event. You mentioned the, the more local education day. Is that something that does happen regionally within other centers too?
- [14:09]
B
Yes, absolutely. And so basically those more local events are based the HDSA chapters and affiliates. So they're given a budget to work with and have these events locally. So the chapters get to basically curate what it is that they're hearing from the community that they really want and what supports they need and then basically making that happen, which is really nice.
- [14:38]
A
Yeah, yeah. Speaking about educational opportunities though, are there any other resources on the website for physical therapists in particular and other allied health professionals?
- [14:53]
B
Yes. So actually I want to say in the past few months HDSA released education for professionals and there are, I know, for social workers we could get continuing education credits for taking those courses. But regardless, you can still go on there for education. I know HDSA does do a lot of virtual presentations for education and that's open to anyone. So really we are happy to have professionals join in on those groups.
- [15:30]
A
Just looking at PT education opportunities on the website and it looks like there's some, I think free resources if you sign up. That looks like there's a pretty star studded crew here of Ann Klus, Deb Kiegelmeyer and Lori Quinn that put together some modules and even a handbook that's. Yeah, I gotta check those out. Even those look great. Very cool. Okay, are there any other resources you think that folks might not know about or underutilized by people living with the disease or their caregivers?
- [16:10]
B
Yeah, that's a great question. I feel like the youth support actually sometimes does go unnoticed. People do hear NYA and they know what it is. And again, it is right. It. It's just an offset of hdsa. So they're this. It's the same organization, just youth focused and with the nya, There are actually more events specific to youth, which I think is really helpful to families because once someone gets a diagnosis, a parent, you know, gets a diagnosis no matter what age those children are. It's helpful to be around other young adults and children where you could walk into a room. And that's all what HDSA events are about, walking into a room and not having to explain yourself because everyone just automatically gets it. So you don't have to walk in and explain what Huntington's disease is, because it definitely can be complex and hard to, you know, explain to someone who's never heard of it before. But we're also giving those tools to children and young adults. So let's work on your elevator pitch. But also validating and acknowledging that you don't have to tell everyone about it. You get to choose who you tell, who you don't tell, how you want to say it, if you want to keep it private, but if you don't, here's how you could spread that awareness and make people understand even just a little bit better what you're going through at home.
- [17:54]
A
It's such a good thing to have those really specific and educational opportunities that, that really maybe equip the youth to. With knowledge and skills to, to talk.
- [18:05]
B
About it a hundred percent. Because we're finding also with this younger generation, more youth are wanting to talk about Huntington's disease. But it used to be this hidden, you know, disease. Don't talk about it. Yeah, maybe there's something wrong with grandma or grandpa or mom or dad, but we're not going to acknowledge that. And we're find that, you know, the younger generations want to talk about it. They want to spread awareness. They want people to know what is happening at home and gain that support and those resources. Because, you know, at the end of the day, our caregivers are adults, but our caregivers are also children when it comes to Huntington's disease, since it is a family disease, we're having, you know, individuals as young as 10 caring for their parents, so really being able to help and support them through this journey. But also we have two youth retreats every single year, always in a different area. So we try to spread them out so that individuals, you know, can attend them. But they're free. They're completely free. And youth, I believe the retreats, we keep lower attendance so that it's a little bit more of an intimate setting and it's a weekend and it's education in a fun way because we have individuals, kids who are coming who are as young as like 7, 8, 9. So we make it fun. And their parents could come with them. And we also will do a support group at that and some sort of art or improv and make it really fun.
- [19:56]
A
Yeah, it sounds like there's such great education and awareness, you know, that being a big push, of course, from the HDSA is that awareness and, and speaking to that awareness, you know, when with a physical therapist who's maybe working with someone with Huntington disease or. Or their family members, you know, what's one thing that you hope that all pts should think about or, you know, be more mindful of when working with someone with, with hd?
- [20:25]
B
I love that question. I would say the key, and I feel like this goes for really any medical professional or any individual really, when working with Huntington's disease. All you need is a little bit of patience because one thing to know is that that individual who has Huntington's disease, oftentimes throughout their entire disease, is pretty alert and aware of what is happening to them. So going to these different types of medical appointments, I mean, those caregivers are going to be battling resistance, I'm sure, you know, from early stage all the way on. So once they get into, you know, a physical therapist office to do that work, you know, they might have just gone through a whole battle in the car or a whole battle in. In the home just to even get in the car to come to that office. So I think it's not only patients with the individual who has Huntington's disease who again is like, you know, battling themselves in their own mind, but patients with the caregiver, because they might come into you really, really frustrated, and they don't mean to be frustrated at you, but it's. It could be the whole series of events that just happened before they got to you.
- [21:41]
A
Right. It's so true. And as someone who works in like an outpatient neuro setting and having worked with a few people with Huntington disease, it's. It's true. Right? It's can be very challenging to get out of the house sometimes. And there's course things that pop up at home that we. We see for maybe 45 minutes to an hour. So, you know, having that understanding or trying to have that understanding of what's going on at home and helping best support both our caregivers and the person we're treating in front of us. Us. I think that's so huge. So huge. Is there anything else you think that we as therapists should know about the Huntington Disease Society of America or. And Maybe working with someone with Huntington disease.
- [22:30]
B
One thing that I like to point out to individuals, whether that's professionals or not, I call it and explain it to individuals as a snowflake disease. And what I mean by that is that if you have met one individual with Huntington's disease, you have met one individual with Huntington's disease. So everyone with the disease is so different. They might exhibit the same symptoms, but they also might not exhibit those same symptoms at the same time or ever. I know that I've worked with families where one family member had extreme chorea. So those jerky movements, uncontrollable movements, and that was like their main symptom. It was a very physical disease for that individual, whereas that person's father had more of a psychiatric, psychological version of the disease. And by looking at those two people in front of you, you might think that they have two different diseases. So that's one thing that I really like to get across to individuals, too, is just that it can look so different on different people. I would just say to any professionals, if you do have that general and basic understanding of the disease, and you get your first patient that has Huntington's disease, definitely put in the work to do a little bit more research to really understand some of the complexities that come with the disease, because it'll only help you be a better provider. Provider.
- [24:11]
A
Right. Oh, such a good message. And, of course, we could always reach out to our local friendly social worker to help to the right resources within the. Within the hdsa, too.
- [24:21]
B
Absolutely.
- [24:23]
A
Definitely learned a lot from all the resources you just mentioned. So thank you so much, Gia. But before I let you go, we do have one last question for you, which is really a tradition here on the DD Sigma, where we ask each of our guests what they like to do outside of work.
- [24:40]
B
I love that. I am a coffee and matcha enthusiast. So I go all around Long island and find new coffee shops and test out their matcha. That's my. My drink of choice and will do ratings. I amongst all of my friends, they turn to me for the food and drink reviews.
- [25:08]
A
So if I'm going to Long island, what is the best coffee or matcha spot?
- [25:15]
B
So I would say right now, my favorite is the New York Beanery in Merrick. They have the wildest drinks, but they make them so good. Good strawberry matcha. Oh, so good.
- [25:32]
A
Okay. Oh, well, if I make it down to Long Island, I'll be sure to check it out. Yes. Yeah. All right. Well, thank you so much for joining us today, Gia. Like, really appreciate all the resources and information that you shared with us.
- [25:48]
B
Thank you so much for having me. This was a lot of fun and I'm so glad to be able to spread the word a little bit more on Huntington's Disease and especially the Greater New York and Long island chapter and what we have going on locally and nationally as well. So thank you for the opportunity.
- [26:04]
A
Thanks for joining us. Special thanks to our guest, Gia Minoli from the Huntington Disease Society of America. 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 this SIG and the ANPT, visit www.neuropt.org. our podcast team includes Sarah Zoller, Christina Burke, Karm Padgett, Jeff Schmidt, Shannon Brown, Skyler Rost, and I'm Ken Vanonko. Thanks to Jimmy McKay for providing music. Please share this episode with the Colle.
- [27:00]
B
Today and I'm sorry. I hope my dog didn't ruin anything.
- [27:08]
A
You know what? Zoom is amazing now. I think it just blocks out any background noise quite well.
- [27:14]
B
I'm glad I. He's. It ruins all the bloopers. It totally does. Oh, oh, can we see him? Yeah, let me grab them real quick.
- [27:28]
A
That's gonna be one fluffy dog.
- [27:30]
B
Sheep. A doodle. That sounds amazing. Ken, do you have a dog yet? What are you doing?
- [27:37]
A
I'm working on it. We're actually dog sitting right now, bro. I just spilled like all of my water when Rogi came in.
- [27:46]
B
No, not on the computer.
- [27:48]
A
On the computer. I got a little cleaning up to do. That's okay.
- [27:54]
B
A handy dandy. Nice HDSA shirt.
- [27:57]
A
Gotta do it for the swag. And for the cause. I'm about to catch a ferry to Long island and show up on this. This walk day. Good. I was hoping that you weren't gonna say a passion of yours was like going to Yankees games or anything, but.
- [28:12]
B
You know, I. I actually like hockey more than baseball.
- [28:16]
A
Good answer. Good answer. I almost typed Rhode island instead of Long island, which is like a funny mistake that other people make but not something from Rhode island should make just out of habit.