Parkinson's Policy Podcast: Dan Feehan from Michael J. Fox Foundation

What does it take to turn scientific breakthroughs into accessible, life-changing treatments for the millions of families affected by Parkinson’s disease?

In this episode of the Parkinson's Policy Podcast, we sit down with Dan Feehan, Chief Policy and Government Affairs Officer at The Michael J. Fox Foundation (MJFF), to pull back the curtain on the legislative fights and advocacy efforts shaping the future of Parkinson's care and research.

Dan breaks down the foundation's current strategic priorities, how a unified advocate voice brings humanity to Capitol Hill, and what needs to happen next to turn discoveries into a cure.

What We Discuss in This Episode:

The Race to $600 Million: Why securing robust, bipartisan federal funding at the National Institutes of Health (NIH) is critical to keeping the momentum of current scientific breakthroughs alive.

The Fight Against Environmental Toxins: Dan shares insight into statewide bans on paraquat—a highly toxic herbicide linked to a doubled risk of Parkinson's—and what these bills would mean for a nationwide EPA ban.

The National Parkinson’s Project: How the foundation is pushing for the full implementation of this whole-of-government initiative to revolutionize diagnosis, prevention, and treatment.

The Power of Grassroots Advocacy: How everyday patients, care partners, and family members can effectively engage with lawmakers to demand measurable action.

If you’ve ever wondered how policy directly impacts the search for a cure, this deep dive is a must-watch.

Transcript

SPEAKER_01 0:11

Welcome everyone back to another episode of the Parkinson's Policy Podcast, where we advocate together to raise awareness and advance meaningful policy for the Parkinson's community. Literally, straight from Washington, D.C. at the Capitol and Beyond, we bring together senators, representatives, researchers, and advocates to amplify the voices of people living with Parkinson's disease. My name is Dr. George Ackerman, Sharon's son and founder of Together for Sharon, joined by uh my co-host Margaret Presson, the president of Power Over Parkinson's. And we want to welcome you back to another episode.

SPEAKER_02 0:45

Absolutely. Thank you so much, George. Um, I have the honor and privilege of introducing our next guest offline. I called him our North Star in this fight. So I'll say it online that he is truly our North Star in guiding us uh through advocacy. Dan Feehan joins us, and he joined the Michael Jakebox Foundation in August of 25 as his chief policy and government affairs officer. In this role, he develops and implements a comprehensive strategic nonpartisan, as we know, policy and advocacy agenda that advances the foundation's goals to increase federal and state investment in Parkinson's research, addresses environmental risk factors, and advances the National Parkinson's project. Dan is an accomplished leader in both public policy and politics and a lifelong public servant with experience spanning military service, the Pentagon and federal campaigns, and prior to joining Michael J. Fox Foundation, he co-led the Playbook Strategy's LLC, advising diverse organization on transformational change and policy strategy. A Minnesota native, Dan was inspired to serve after witnessing the attacks on 9-11 while a student at Georgetown University. He joined the Army, completed Ranger School, and served two combat tours in Iraq. His service was recognized with the Bronze Star and Army Commendation Medal with Valor. Following his military career, Daniel uh Dan uh dedicated himself to education, teaching middle school math and underserved communities in Chicago, Illinois, and Gary, Indiana. His commitment to public service led him to the White House Fellowship Program, after which he went on to serve as principal duty assistant secretary of defense for readiness at the Pentagon. In this role, he worked on military readiness and policy, supporting service members and veterans. Dan is recognized for his leadership on veterans issues, education, and community development. He holds a bachelor's degree in international politics from Georgetown University and a master's in public policy from Herbert's Kennedy School of Government. Dan, thank you so much for your service to the country, service to Underschool, Underserves Children, and of course our Parkinson's community at large and being with us today.

SPEAKER_00 2:52

Margaret, it's an honor. Thank you for having me. Thank you, George, as well. Absolutely.

SPEAKER_01 2:57

Well, I'm excited today, of course. We were just together in New York, but I've met you so many times, but we never really have a lot of time because it's so busy and everybody I'm even dressed appropriately for today. And uh my uh yeah, my beautiful card, they see. But uh today is really important, and policy, I think, is my view, and I know Margaret would likely be is probably the biggest, the most important thing in our country and really worldwide, and having an individual like yourself leading the way means the world to me personally, my family, and uh as well as our uh uh my co-host and our community. Just curious what encourage you to go into this line of work and of course thank you also for your service.

SPEAKER_00 3:37

Uh George, thank you. I well, I'm I'm in this work uh because I believe in its mission, in its in its importance, and the power of its its impact. Um I've had a pretty varied career, uh, but with one through line, and that's the idea of public service. And I believe this role, especially trying to change policy at the highest level, is a function of service too. Um for me, though, it's also incredibly per personal. I I was lucky enough as a as a kid to have a a grandfather that uh was larger than life to me, and was someone that was actually the only uh member of my immediate family that I I knew personally had had served in the military and was one of the big reasons I joined uh the military myself. Um but he's also someone I watched uh get diagnosed with and live with Parkinson's uh for the last uh over 20 years of his life, uh ultimately succumbing uh to injuries from a fall in 2019. Um so the opp the opportunity to work with high impact in a mission I believe in, and it's something so deeply personal to me and my family in Parkinson's um, the advocacy that comes with it, the chance to really help make transformative change for a community uh is something I I am very honored and very lucky to be able to do every single day.

SPEAKER_01 4:59

Well, we're grateful to have you here, and there's so many questions. I hope we can get to them all. But even after the show concludes, the conversation has to continue. So I'm gonna send the show to Margaret.

SPEAKER_02 5:10

So sorry for your loss. As you know, George lost his mother to Parkinson's. My dad is now eight years into the battle of Parkinson's. So, you know, I think we all share a personal endeavor in this mission. Can't thank you enough for the work you're doing in tying us together. Um, so we have a cohesive mission as we fight this fight. Um, I want to expand a little bit on uh what George noted. It kind of seems like we're having a moment right now. The energy is palpable around Parkinson's advocacy. I just wanted to get your take as to why you think that might be and why we're starting to really get the national stage attention.

SPEAKER_00 5:43

I think it's a degree of momentum, and momentum has a has a way of it that um with enough work up front, it can kind of take on a life of its own. Uh, but in Parkinson's, it is and will always be a community-led effort, uh, a patient-led effort, a care partner-led effort, and a larger healthcare community-led effort. And I think with the urgency of the moment, Parkinson's is the the fastest growing neurodegenerative disease in the world. The people are feeling that people are feeling an impact of like, oh, I know someone with that. I know someone with that. And that just increases in urgency and a kind of a shared understanding with it. Um But really, it's also the the approach to it too, and viewing Parkinson's as a a national um priority as something that has to have an impact at the highest level. Passing a huge act, the National Plan to End Parkinson's Act in 2024, called it a priority and and made sure that Congress was going to put itself forward in that regard. That that's momentum. Um and with that now, capturing the voices of not just hundreds, not just thousands, not just tens of thousands, but if we can get to hundreds of thousands of voices across the country to continue that momentum, that's a real energy and effort. And it's it's not not an effort with with uh without an end in mind. We have to get a place where funding increases dramatically, um, provided funding provided by governments, where we actually have an impact on the environmental contributors to Parkinson's, and that that same National Plan to End Parkinson's Act finishes a National Parkinson's project uh with urgency as well that shows the federal government a roadmap to actually take it as seriously as it needs to.

SPEAKER_02 7:26

Thank you.

SPEAKER_01 7:27

I also want to thank the Michael J. Fox Foundation and your entire team, Amy, Julie, everybody, because uh had the honor to be president in two of the public policy forums. And again, this is the can't one thing I want to note is how it's a one-on event like Unity Walk, but it brings everyone together. And that's something that in my six years you don't see a lot, but I see again another shift in how amazing not just the event is, but how uh you go for obviously to speak to representatives, but you also go to see people you've either never met or have known, like you know, Margaret and never got an opportunity. And I I don't want to start being too uh you know emotional, but it's you it really is life-changing. And when you're standing in that hall in the Capitol, any part of it, you feel like you're in a movie, but you're there for a real purpose. And I felt that day first time and every time, really, that my mother was finally she kind of in a way made it because I felt we were never heard or seen. And that's what I think the uh foundation and the you are really doing. And I know you know it, but I feel like we need to do that and thank you. Maybe you could re-listen to this at your house every day, because if you ever forget, and I know some days it must be tough and frustrating dealing with all of you know the political world, but uh that I hope reminds you all to never stop because we won't.

SPEAKER_00 8:44

Yeah, I that's um the dynamic of the especially the the patient and care partner community is what reinvigorates this process because it is it is a lot of work. And it's a lot to not just hold the attention of bodies, legislative bodies around the country, to get their attention for that moment to really listen and take action takes a ton of energy for many, many people, but that energy also feeds upon itself and and furthers it. Um, so that if there is ever a day where you're feeling down, I mean it's there's a lot of similarities to the journey of Parkinson's and necessity someone living with it has to have to get up the next day and keep fighting um and and do that through their daily life. That's an inspiration for the work that we do. Because if that if that patient is giving up or getting up every single day with that same energy, that same fight, how can you not um as a as a broader community?

SPEAKER_01 9:39

And no, from your experience, uh which is incredible, in public service, uh, I myself, a lawyer and a police officer in the field, and with the Coast Guard auxiliary, uh, I know how important it is to ourselves too when we wake up look in the mirror to keep fighting. But uh as far as advocacy, what are some of the most effective strategies advocates can use to ensure Parkinson's remains a bipartisan uh issue? Uh and also, you know, I want to make sure we continue, Margot likely follow up that it doesn't mean if you can't literally make uh one of the policy forms that you're not uh your voice doesn't count. So how can also everyone, even at during the show while they're watching, can freeze the show and you know, how can they get involved too?

SPEAKER_00 10:21

Yeah, I I think it starts, and this isn't specific to to Parkinson's, this is it works for a lot of areas. Bipartisanship doesn't happen accidentally. It it really doesn't. And you you have to start with a framework where advocates themselves, and advocate is anyone who is trying to make change happen for Parkinson's, that you stay focused on the idea of shared values, better health, better health outcomes, better and more research, better support for families, and an accountability for the taxpayer dollars. Parkinson's cost our country, we know this, we just released a study last week. Parkinson's cost our country over $82 billion a year. When you show up with those values and then show up consistently and with a clear ask, that's how bipartisanship happens. And you show up to every office. Doesn't mean every office ultimately sides with you, that doesn't matter, but if you share up consistently with an ask with those values in mind, that's where bipartisanship comes from. You frame it as a human issue, a national health issue, and not a partisan one. Um it's a pretty simple extension. This disease touches families in every community, every state, regardless of anyone's politics in that house. That's that's how Parkinson's works. So when we advocate for it, it should be with that same mindset, with urgency and impact, and that really the scientific opportunity we have as a country to do something about it, whether in Congress or in a state legislature around the corner. The second piece, though, is the consistency. And George, this is a bit to your question here. Yes, there's there's an opportunity to show up in Washington, D.C. with big numbers, and we'll continue to do that. But consistency also means showing up at home, showing up in congressional offices and district offices. It's not just about one big meeting or one big moment, it's quieter moments where you're actually developing a relationship with a legislature, a legislature at home or their staff. Those are real human relationships that don't see politics. But third, that's where your story comes in. This becomes a bipartisan issue of urgency with your personal story. Because when that story is tied to an action, then a member of Congress, a member of a state legislature actually has action to take upon it and a face to remember with the cause. They have something that they can tie to it and say, I know how important Parkinson's is and I know what I should be doing about it. And that's where ultimately change comes from when you put these pieces together.

SPEAKER_01 12:56

Thanks. I don't know many topics in the country, unfortunately, today that are in a way positive, but this one is definitely one that we should all be uh on the same boat and on board with. Thank you.

SPEAKER_02 13:07

Yeah. And I want to share, you know, your team with Amy and Julie, et cetera. Um, I think we're certainly seeing a lot of synergies between the foundation, of course, and EWG, uh, of course, DC with PF, APDA, et cetera. We're just starting to see this beautiful synergy of organizations coming together with the shared theme and shared goal. Um, we saw that at the state level. I'm so thankful to Amy. We've done some work here in Virginia where we had a state advocacy day. Um, we also laid the groundwork at this session, um, hoping for better luck in the 27th session, but we had our parac bill. It was tabled. Um, but we laid the groundwork and we'll continue to show up here in Virginia and continuing to educate lawmakers during the offseason. What's the disease? What are the faces of the disease, what are the numbers associated with the disease. So um thank you again for your team mobilizing us as local, you know, boots on the ground so that we have um that energy and resource to affect change here in our state. Um, so thank you for that. And I wanted to kind of stay at that high level at the foundation. Share with us what the Michael J. Fox Foundation feels are the are the pillars as we kind of march through 2026 in terms of advocacy.

SPEAKER_00 14:21

Yeah, absolutely. I think for us, it very straightforwardly, there's four things. And the fourth thing really is to tie together the top three. But it starts whether not just at the federal level, but extends to the state level as well. First, first, research investment. This country does not nearly uh invest in Parkinson's research to the to the degree of the challenge of the problem. $82 billion a year this disease costs us. And we, at least intentionally at the NIH, only invest $250 million a year. Incredible disparity between the effort we're putting in to ultimately cure Parkinson's and understand it and and what the actual result of that is. So drive research investment, and that includes the state level too. States are stepping up around the country, and we're going to continue to push on that. Secondly, it's confronting the environmental risks of Parkinson's. We uh we know that the environmental contributors to Parkinson's are significant. We need to know far more about what they are. For now, what we are confronting is the idea of paracat. Pariquat's an herbicide that is strongly correlated uh with a higher risk of Parkinson's if you live or work near an area where it is sprayed. 70 plus countries around the world have banned it because of the connection to Parkinson's. We as a country have not. And so we are trying to ban it at the federal level, but also at the state level, to create momentum around this public health risk that Paraclop presents. But that's just one example of a larger field of confronting the environmental risks that contribute to Parkinson's. Thirdly, the National Parkinson's Project. Mentioned that law that we passed two years ago. We are now implementing it, implementing it through this project. And that project is supposed to demonstrate at the end the whole of government effort that needs to happen in order to confront Parkinson's. Alzheimer's did this about a little over 10 years ago in the same result of having a concentrated level of effort. And as a result of that, Alzheimer's funding increased dramatically, as did the connection across the government and an improvement on the lived experience of someone living with Alzheimer's at the time. That has to happen with Parkinson's. Those are our three priorities. But the fourth pillar really is advocacy. It's this thing we're talking about right now, because advocacy is power in this community. That actually achieves this change. None of this moves without people. A core part of our strategies included is trying to build that strong, informed, and motivated network that can operate essentially without, they don't need direction once they understand what the the actual priorities are, because as we mentioned, they have this incredible story and an ask to tie it to and a willingness to build relationships with legislators around the country.

SPEAKER_02 17:06

Thank you. And I I want to echo, you know, that's what I think your team is doing so well because we felt very ready to talk to lawmakers here in Virginia. We, of course, had our personal stories, we had our ask, we felt informed. Um, so I appreciate that, you know, the Michael J. Fox Foundation is making it making advocacy easy and promoting that we we have it innately with a story. We just, you know, and then have our talking points with our ask. I think that's what's being done so beautifully right now. And I do want to also thank you for the emphasis on those living with the disease currently, that there needs to be advocacy for that group as well. Of course, cure research, et cetera, is important. But how do we better the lives of those with the disease right now is also a priority. So thank you for noting that as well.

SPEAKER_00 17:52

Yeah, and and I think there's a degree here that if you've never gotten into this or done this work, you all you often uh this this thing that I find, and this is not specific to Parkinson's, people are almost looking for permission to become an advocate. And I'm gonna tell you very straightforwardly, you don't need permission from anyone. You don't. In fact, our work collectively, and when I say our, I mean all of our work depends on people going, I don't need anyone's permission. So if you're waiting right now, uh you're hearing from me, you don't need anyone's permission to become an advocate. And if you want to join uh the Fox Foundation, easy way to do so is michaeljfox.org backslash advocacy, and we can help start that journey with you and figure out whether you've got five minutes, five days, five weeks, five months of time on your hand, we will help that journey become easier for you. And as as George mentioned, too, all of the national organizations are working together more than ever right now to make sure that we are speaking to the same goals and objectives and trying to motivate people all around the country to do the same. But you don't need permission to join this movement whatsoever. In fact, we need you if you're someone who's who's saying, I'm just waiting. Well, don't wait anymore. Jump in right now.

SPEAKER_01 19:07

No, you could always count on us 24-7 for this. I feel like this is kind of becoming a news channel in a way because of the news is breaking. I remember it was recently Margaret's birthday, and I didn't want to bother because it's her birthday, but we heard about the counts, and that's the first thing I did was say happy birthday, but uh look who we just is incredible.

SPEAKER_02 19:24

So I think you've asked for a better birthday present.

SPEAKER_01 19:28

Also, I remember even the day you know we worked very hard. I tried to do 400 shows, not my shows, but podcasts for different people who weren't about Parkington to get people aware when they were trying to pass the national plan. I remember just uh, you know, my mother and four and your loved one might not be here to see it, but I was kind of very emotional because I know that she would have been really happy for the community today. Um how come, as actually, you know, moving forward, but also joining with your last comments, which were really again on point, how come grassroots advocates uh and even little smaller organizations also better partner with Michael J. Fox Foundation to turn personal stories into measurable policy change and increase federal funding? And then, second, unfortunately, I throw another question is you know, sometimes it's also can be frustrating. People like myself, Margaret, and uh you don't give up because it's uh in a kind of in our heart's passion. But I do also get frustrated, at least in Florida. I'm in South Florida, and it feels I just shocked to see that you know the environmental working group, they don't even list Florida, and it's kind of very draining because I spoke recently at the commission here and it was so overwhelmingly positive, but at the same point, they aren't talking about banning paraquat at all. So, you know, what can someone like myself, even though you always are always there for me anyway, 21st of them, what can someone like me in Florida do to get us on that um, you know, but bill to get rid of power quad in Florida too?

SPEAKER_00 21:00

Yeah, I I think what really we've we've talked about this, what what energizes people, what energizes organizations, is getting validated in the idea that their voice matters, that there's a responsiveness to that. And you know, you mentioned coming to DC as as one example of that, of being well received, of an office going, yes, come in, talk to us about it, of taking dutiful notes, and at the end of that, going, Well, we're gonna get more involved with this. Your voice matters in this, and there's a real structure behind it too. So, our role as a foundation, and we want to reduce the barrier to entry. You don't need permission to do this. We want to create opportunities to engage and show people that the advocacy isn't some abstract concept, it's it can produce real wins. And I can point to a number of real wins that we've had just in the last year. They're not always going to be the biggest wins in the world, but little wins add up real quick, and especially if you keep applying the pressure to do so. Um a lot. People, George, you know this, care deeply about it, but they don't know where to start. So we try to make it accessible. The idea of advocacy. We want to give people very clear ways to actually take action. We also want to help you to tell your story and help connect shit connect it to those actions that we've talked about here. And while going to DC is, yes, an important part of this, there's 364 other days of the year too. What does advocacy look like in that? Because it doesn't have to be a trip to Washington, D.C., as I mentioned. It could be starting to get to know your local lawmakers and the connections they have to Parkinson's. George, you mentioned Florida in this way. We have research funding on the table to consistent research funding to potentially pass this year. I'm very optimistic about it, because one lawmaker, a Republican, has a family connection to Parkinson's and started that ball rolling. But it was only with the appreciation of that, the connection that they had, and then the momentum created behind it, that that opportunity is now a potentially game-changing opportunity for the state of Florida to be able to put research dollars specifically towards Parkinson's. That can extend to the environmental space too. We just have to keep making that effort. Because when folks are actually confronted with the realities of this, take Parquat, for example. Most people don't know still. It's not that they're choosing to say, I know what Parquat is and I'm okay with it moving on. Most people don't know about Parake yet. And so you telling that story over and over and over again is eventually going to find an audience of people that go, I didn't know that, and I want to do something about that. And that person might be a legislator themselves or might be someone who's very much connected with a legislator, that human story again. That person that can whisper there in their ear and saying, You know how hard Parkinson's has been on me. Here's an opportunity to do something about it. Just because things are the way they are right now, George, that's the whole point of advocacy. It's dreaming and envisioning a different way for them to be. And that's what our collective action here is. Politics is hard though. It tends to take from you. And you, this is engaging in politics. It tends to tends to take more than it gives back. So how you get up the next day and engage back with the community, find energy from the community. The way I do it for myself is when I'm frustrated in one area, I look for other areas where I see that optimism and hope in action, whether that's in a different state or in the federal government. There's always going to be some area where things have that positive momentum going. And that's what I personally look to to say, okay, how am I going to get back up and do this again? But as I said, I look to the community because this community is such a powerful community that already is helping each other navigate a terrible disease. And they do that by sharing with each other how to get through each day, each hour, each minute if necessary. And that extends to the policy work too, which is in envisioning a world in which hopefully someone living with Parkinson's can have a better existence. But the consistent theme I also hear is I don't want someone else to go through what I went through. How do I prevent this? How can we do something about this collectively? And that positivity, in the face of very every reason to be negative, that positivity is what's so inspiring here, too. Um ultimately, the people closest to Parkinson's are the most credible voices. So our role at the Fox Foundation, the role of any organization working Parkinson's, is to turn that lived experience into organized, effective advocacy that lawmakers have no choice but to respond to because we come to them with the values we talked about, that shared value, we come with a story and we come with specific asks that will make our lives better and help a country deal with an $82 billion a year and growing problem that it is not living up to right now.

SPEAKER_01 25:46

Well, you motivate me always, and I know I'm confident you'll be motivating everyone through our show and know um as this I hope reaches the world. But as you mentioned, the only reason I even do this is to I don't want other people to feel alone, caregivers, and don't want anyone else to have to battle this like our loved ones have. So thank you again.

SPEAKER_02 26:05

You mentioned um I want to close on some of the quiet moments, like you noted, some of these quieter moments that might not look like a big meeting in DC, but quieter meetings um locally. Um, you know, I am fortunate to have a relationship with you all and can mobilize pretty easily and lean on you guys, but what would you tell some of the other smaller foundations, kind of like a Power Over Parkinson's? How do we, who we when we see our folks every day at our exercise classes, education events, how do we kind of invigorate them, not just the patients, the care partners, the family members, everybody in our local community? What would you tell us? How do we invigorate those people? I know you noted you don't need an invitation, um, but sometimes it doesn't always come naturally. We know we've got some fantastic advocates who it seems to come naturally for, right? And they're they are our national voices and they're fantastic. But how do we get these local folks who are just not sure they have the disease, they have a beautiful story to tell, how do we invigorate them to have those quieter moments?

SPEAKER_00 27:04

I think there's there's two approaches to to take, Margaret. There's the the formal approach. So if a uh a smaller organization is not involved in UPAC yet, the Unified Parkinson's Action Action Council, join UPAC. That doesn't mean you're obligated to do any more or any less, but it plugs you into what others are doing and to find, say, oh, there's an example of a way that I can take action in my home community too, and a sharing of best practices that among them. That's that's a great, that's a great formal way to do it. The informal way to do it is sharing what your experience is like. You just talked about what it's like to educate in Virginia right now. And so whether that's sharing with patients at a at a boxing class, whether that's sharing um in a local community meeting, sharing the idea of this is what my experience was like. And so it's not just the idea of you don't need an invitation, but sharing how what you thought would be scary wasn't scary, about what it's actually like to walk into a hall of Congress or into the state legislature, or what it's like to call a member of Congress for the first time. Let's start there, or write a letter. What is that experience actually like? And the next time you're going to do that thing, and this isn't just this is someone is already plugged in, invite someone else to join you in it, whether that's writing letters or emails, whether that's calling a congressional office, you want to do this with me, and take away the idea of the unknown, because the unknown is scary, just like in anything else. But taking how can you at your individual level find someone in your life to take away the unknown here that you know would benefit from actually putting their energy towards this and who would benefit from all of us of becoming one more voice to this that ultimately has to be there. We need hundreds of thousands of conversations like this happening informally and saying you can do it. It's not so bad. You don't need to be the one out there leading with the a speech, but your presence alone starts to really build something. And that's what I that's what I'd share that you do. Not just do it yourself, but if you're there doing advocacy already, find someone else. And we at the Fox Foundation are happy to help bring them aboard with that. Again, it's michaeljfox.org backslash advocacy. That's a first simple step. You're not committed to doing anything, but you're committed to learning more.

SPEAKER_02 29:24

I can attest to uh being a member of UPAC and feeling supported and having kind of that that foundation so that we can go out and talk to advocates and patients. Um, and I'm sure our community members are a little tired of me of ahead of every event. Now I'm trying to invigorate them and tell them that, you know, we can do this. Um, but I just I can do that because of being a member of UPAC and having that support, talking points, latest data, et cetera. So thank you for that. And also, um, you know, I want to thank you for just sharing the different levels of advocacy as well. Folks can dip their toe in. Um, sometimes it's a written letter you can mail, and then maybe you're a little invigorated by that, and then you take the next step. So I I I appreciate you kind of breaking it down um in terms of kind of just dipping your toe in first um and seeing where that gets you and going from there.

SPEAKER_00 30:15

Absolutely. It's um it's my pleasure, and I'd be remiss. Thank you both for what you do. Um, George, I remember you're one of the first folks I met in this work, and you are a testament uh to the consistency that I talked about. And Margaret, through both reputation, even though it's great to meet you today, your reputation precedes you in this of seeing as someone who's stepping up for their community, who is so well known and regarded that it invites others to participate in this too. This is what it takes, folks like both of you, to be in it as well. So thank you for what you do every single day as well.

SPEAKER_01 30:49

Total. We want to thank you too for your time as we wrap up, unfortunately, in a way, but I do hope this is to be continued. But I was curious, you know, uh what's your I know there's a lot to be said, but what are some of your excitement and thoughts on the council finally being seated, taking their first meeting in uh June, and also, you know, the future for the policy forum. But finally, after that, the three last one is what message of encouragement can you also leave for the Parkinson's community today?

SPEAKER_00 31:19

Yeah, I think so you mentioned the the National Parkinson's Project Advisory Council. Uh the 10 non-federal government members were were just named, a result of advocacy, pushing it consistently since the law was passed, but especially last fall from the community and last month, we pushed it and demanded that this council be sat, and this council is there. Um, we're excited at the Fox Foundation that we have uh both our CEO, Debbie Brooks, is a part of it, and uh one of our Fox Foundation uh pain patient council members, Israel Israel Robledo, is a part of it as well. But the rest of the folks are all incredible leaders in their respective areas as well. I'm really excited for these 10 people, plus the federal members to be in the room together to talk about uh the very big uh envisioning of how to change the dynamic of Parkinson's to make sure it comes out with a clear commitment of the funding needed for this. The law doesn't say you have to do that. We are gonna make sure that that commitment of how much funding and research investment needs to come out of this as well, how we're gonna address it for the people living with Parkinson's uh right here and now. And importantly, because this council is has been very delayed uh in getting started, how are we gonna get back on to an urgent and aggressive track to actually deliver the report coming out of this as well? So really excited to get started on that work finally, but we're gonna do so with with renewed urgency uh as well. The policy forum, um, you saw it put on um with strategic partnership uh from Parkinson's Foundation and APDA. We're gonna try to continue that in the spring. Um the spring is a great time to be in DC for a lot of reasons, but it's the time that Congress is really trying to figure out what ingredients are gonna go into the cake of the budget. And so it's a great time to be there and and uh keep stay tuned for what that'll look like next spring uh as well. Uh for advice. I actually shared this with the the Michael J. Fox uh patient council just last week. I um I I had this uh I had a a really great opportunity years and years ago, 20, 20 years ago, to to go to the U.S. Army's Ranger School um to go through and hopefully graduate and get a ranger tab Um as a as a result of it. And I worked worked really hard to get there. And I um at first 24 hours of ranger school is really hard. Um they're trying to get anyone they can to quit and voluntarily quit um because it's miserable. And they work you out really hard, they don't let you sleep, and then they just leave you outside uh without any instructions. And so you're just standing there and it started raining on me. And suddenly this thing I had worked for for over six months that I couldn't wait to be there for, I wanted to be anywhere but there. I wanted to leave. I I wanted to be done with it. And I watched as a couple of people were literally voluntarily quitting and that that idea started to creep into my mind, and I'm thinking about leaving too. And at just that moment, um, a young soldier next to me that couldn't have been more than 19 years old tapped me on the shoulder and he said quit tomorrow. And I kind of like rubbed some rubbed some tears from my eyes, like, I I don't know what you're talking about, I'm not gonna quit. What do you mean? And he repeated it and said, quit tomorrow. And then when tomorrow comes, quit tomorrow. And the day after that, you quit tomorrow. And eventually either things are gonna change or you're gonna get to where you need to be. Quit tomorrow. And I share that advice with with this broader community because it is that mentality that maybe gets you through a tough day, but it is that mentality that has to be a part of this community until we get to where we need to be in addressing Parkinson's for this country. So the message I will share with everyone here, quit tomorrow.

SPEAKER_01 35:25

Thank you, sir. I want to send the show also our love and support to you and the whole foundation, but send the show to Margaret to wrap up.

SPEAKER_02 35:32

Yeah, absolutely. Dan, thank you so much for sharing your time, experience, expertise with not just George and myself, but in our entire community. Um, as I said, we're so thankful for you being our guiding star, our North Star as we look to the Fox Foundation as to how we navigate this with our shared goals. Um and we couldn't do it without you. I know having a local foundation, we feel immensely supported in this fight and endeavor by you all. Um so, you know, I can't, I really can't thank you enough for having a living parent with Parkinson's who I see every day, including all of our community members who come to our classes every day. Um, I just feel, you know, it's silly to say like I'm having a blast, but I'm having a blast executing on this mission we're all so passionate about. Um and I feel, like I said, immensely supportive being able to talk to our community members because of that overarching support from the Fox Foundation with your leadership. So thank you for sharing your time with our show. Um, and thank you for not quitting and waiting till tomorrow to do that nonsense and leading us all in this charge.

SPEAKER_00 36:41

Thank you both so much for having me on. It's an absolute honor and keep it up yourselves.

SPEAKER_01 36:46

Thank you, Dan. And thank you also, Margaret, and everyone behind the scenes that makes this possible, but also more important, most importantly, thank everybody listening. Hope you'll share the show. But even more important than that, contact your representatives, uh, city, county, state, federal. We need everybody in this fight for awareness towards a cure. And you can be sure all three of us and the Michael J. Fox Foundation will be working 24-7 by your side in this. Uh this has been another episode of the Parkinson's Policy Podcast, where we advocate together to raise awareness and advance meaningful policy for the Parkinson's community. This has been a beautiful episode and one that I know will motivate me to continue to fight daily and also Margaret. So thank you all. We'll see you at the next uh episode. Thanks, everyone.