Parkinson's Policy Podcast: Inaugural National Council Meeting Debrief

The first ever meeting of the federal Advisory Council on Parkinson's Research, Care, and Services was recently held to guide the National Plan to End Parkinson's. The council's goals are to improve Parkinson's disease diagnosis, prevent the disease, and support care partners. Advocacy groups are pushing for fast action. We give our recap of this important discussion.

Transcript

SPEAKER_01 0:12

Hi everyone, it's Margaret Preston with Power Parkinson's and my awesome co-host for the Parkinson's Policy Podcast, George Ackerman. We are here uh following the historic day yesterday, Monday, June 29th, uh, where our first National Plan Council meeting was held virtually. And we just wanted to spend a few minutes to dissect the meeting a little bit and kind of um provide a quick update. So, George, I'll let you lead us off.

SPEAKER_00 0:38

Thanks and everyone, welcome back. This is a special edition. We need the breaking news sound for uh the Parkinson's podcast.

SPEAKER_01 0:44

The ticker soon enough.

SPEAKER_00 0:46

We also want to thank everyone for your support. Send the same love back and please share the show. I feel this can change so many lives. Uh, and that's we don't do any of this unless we can come closer, not just to cure, but stopping progression, reversing it, and then the cure. Yesterday we Margaret started off with not much. I think this episode should be called History Is Made. It's very exciting. I remember standing again, I said it in this show, uh, and like I think it was Target or something, and when I found out the national plan passed, and unfortunately it stalled until this finally happened. And likely this happened because of the advocacy from everyone heading to DC, from all the organizations supporting it. I do feel like this policy is one area that everyone really is together no matter what. So it was exciting. Uh, I thought it was going to be live there, so kind of would have liked it just live, but that's tough, you know, schedules and things. But one thing was really just an introduction to the panel, to the council, to the federal uh representatives, and the regular people like us. Some, of course, with Parkinson's one caregiver and some experts that we had the honor to actually have on our show. If you see this and you haven't been on the show and you're a part of the council, whether uh the personal side or federal, we'd love to have you on to share your experiences. We've had a lot of people on prior, so now they'll have a very different perspective. So just a few things they uh went over with the charter. The federal Parkinson's had programs that had a nice long lunch. I like that one. They also overview of the federal Parkinson's programs, part two, some of the goals and uh some other areas, but I want to send it back to Margaret and you know your thoughts for me. It was definitely again history, but as they mentioned, they're very behind. So I just hope as they speed through it, they don't miss something. Uh people might not have as much say, but eventually they'll probably catch up. And by the way, one thing I loved was before the meeting started, they played some clips from uh some of the actual sponsors of the bill, like uh Representative Tonco, who we love, and um my Florida representative, not specifically me, but in the state of Florida, Gus Bill Arrakis, and of course uh uh all the individuals who made that uh possible, uh, as you all are well aware.

SPEAKER_01 3:02

Yeah. Well, I think I can certainly echo Georgia's sentiment. I think we were so enthusiastic when the law passed. Um, we have missed, of course, some statutory guidelines, including being late on having this meeting. However, I think we still have immense hope as a result of yesterday, um, with a terrific cross-section of congressional leaders, uh, folks with Parkinson's, uh, doctors, of course, in this space. So I think it's a, like I said, a great cross-section of everyone who could collectively affect children. Um, most importantly, of course, the patients being able to share their story and a little bit more about the disease and its complexities. Um, I was excited to know there is um a request for information, RFI that folks can submit. So I think uh while there is this council, uh everyone across the country's voices matter and everyone can provide this input. I believe they're taking input um through August 22nd. So I encourage folks to go on, and we can certainly provide the link within this video to share their experiences with Parkinson and Parkinson's isms. Um, this is open to families, caregivers, advocates, um, of course, scientists, clinicians, but I do encourage our community to go on and share because we all have a voice and we all have a story to tell related to this disease. Um, and I think it's going to take all of us collectively to um ensure lawmakers understand this disease thoroughly. Um, because today I don't think that's the the case. And that's, I think hopefully what this law will help uh help change, um, creating a greater awareness on how complex this disease, how individualized it is. Um and it, as George and I have said many times, it's so much more than a tremor, and it's our job to educate these lawmakers so we can have um policy in place that can serve this community while also actively working on a cure as well. So I think that's that request for information um uh was motivating to me because it allows us all to take a little action, even obviously uh for folks who are not on the council as well.

SPEAKER_00 5:22

And this show is literally creative to follow, in my opinion. Hopefully, Margaret agrees the council, the progress of government to have those representatives on. But what was kind of interesting was the numbers when they put up how many people, you know, even send in public comments or even apply to the council. I like to see that in the millions someday. Obviously, it's gonna take time. But we just like the show, we don't we just want awareness. I think the more people who are aware, the better it'll be for the council, a little better it'll be to move legislation along. So it's definitely interesting, exciting to see, you know, what's to come. Also, of course, we both want to send a shout out to former representative, uh, but always in our eyes, representative Jennifer Wexton, who is uh struggling now with PSP, I believe. And that was a big topic of conversation too. So we're not just hoping for Parkington's cure. We want it for all these uh illnesses that are very similar.

SPEAKER_01 6:18

Yeah. And as George noted, you know, George and I came together to follow this law uh and and its progress. And in addition to just simply serving this uh underserved community uh within the Parkinson space, I think um we're we're we're we're due our time, I think, at this point. And George and I really wanted to highlight um policy related to Parkinson's, as well as hopefully um engage our listeners to feel like they can take action in their local um areas as far as talking with their lawmakers at a local level, state level, et cetera. So um we we aim to serve and we aim to hopefully instill um a little action in our community and show people that advocacy can be bite bite-sized and it's very tangible and very doable. Um I also wanted to note, uh, I believe a recording of the meeting is also going to be published if it's not already. We'll provide it in the link to this video, as well as a detailed meeting minutes. So if you miss the meeting, you can certainly catch up there. And of course, uh listen to our take right here as well. So um I think that does it for me. George, do you have anything you want to share before we exit?

SPEAKER_00 7:34

I want to thank all our listeners. Hope you'll share it with not just people in Parkinson, but people outside of the community. We need everyone. Also, special thanks from our show to you, to the public council members, uh, Dr. Oaken, uh, also Dr. Chen Plotkin, Jesse, and uh Israel, as well as Sarah and everyone else out there. Anyone we didn't mention, you're we would love to get the opportunity to speak to you too, and the federal uh members too. If I am always honest, I'll always tell the truth. We've been working behind the scenes hard. It's tough to get federal agencies. Sometimes they have rules, send letters to them all. So we're still gonna, we won't give up. You know, to anyone listening, though, knows anyone in these federal specific agencies. We just want people to learn about the agencies. I didn't even know some like the Department of Defense, some of these uh organizations, even why they're there. And then when I did, it was great to see so many coming together for one main purpose. So again, I guess the b best way to end is stay tuned, but not just to the council, to our show. And the other thing is please email uh Margaret or myself if you have ideas, uh topics, or guests that you love to see on the show. We have so many shows coming. We didn't plan it, but it just happened because again, policy is the only thing uh really worldwide that everyone's talking about. Laws are being changed every day, and it's just fascinating the time we're in, and we're I feel again we're part of history. And this is still as of almost 7-1, 20-2060 only. And I say, right me if I'm wrong, because I don't know. The only show covering this 24-7. I'd love it to be someday a news station, and we'll need some other reporters live. So we'll see how it goes. But right now, uh we're gonna keep fighting for all of you for uh Margaret's dad, who that's the most important thing. When we come on the show, we're gonna start seeing how our father is, how all of you are, and again, memory of my mother, Sharon. We uh thank you all so much for your time, for our uh your support. But we need again everyone reaching out to your state reps, federal, and tuning in because we have again so many incredible guests like we just had uh on the show. So thanks everyone. Thanks, Margaret.

SPEAKER_01 9:36

Thank you so much.