Steve: you see the news this week? I did. Like Parkinson's news? What did it say? It said, no more paraquat. Not no more, but Syngenta. Syngenta's own. The largest manufacturer of it is going to stop making it. Right. Welcome to The Secret Life of Parkinson's, a podcast created by people living with Parkinson's to help break the stigma of a disease no one likes to talk about. Now here are your hosts, Jessica Krauser and Brian Baker. So I wanted to put that out there and we'll get to in a minute, but we have some special guests with us today. We have George Ackerman and Margaret Preston. Hello, everybody. Thank you guys for coming on. They're both advocates for Parkinson's. They've each had a parent with Parkinson's. And so they've, I think you guys, well, actually you'll have to tell us how you guys met, but yeah, so I want to talk about all the things that you guys are doing. You have a new podcast out called... The Parkinson's. policy project podcast. Did I get that right? You're saying important P's. Progress is also important. He said it slow enough, but we just got done with our speech therapy conversation. I had to think about what it was to do. Anyways. PP. Parkinson's policy podcast. We're going to move on from his little antics. ⁓ Anyway, so welcome, you guys. Thank you so much for joining us. ⁓ But yeah, why don't we get started by talking about real quick how you guys met, because I know that there's that background, but then also what you guys are doing and why it's so important for people to understand if they want to advocate. Yeah, that's right word, right? If they want to advocate, what can they do? And just because this Syngenta thing came out. We don't stop here. can't, because there's still so much ground to cover. So if you guys can start just with Calumet. I have been doing this, unfortunately, six years since I lost my mother due to Parkinson's. And I always had in my background is I'm an attorney. I'm a PhD, actually, at Teach Public Policy and Criminal Justice. So I've always had a background in advocacy and trying to be a voice for others. I always had this idea in my mind. But for some reason, just the last year or two, policies really, in my opinion, has become the number one aspect in the Parkinson's community. And also what's really, in a way, spectacular is now people around the country can get involved. In the past, I felt I was advocating kind of for people, but really never had anything to tell them to do to join in. that's what kind of spurred this movement. And it's the only one, in my view, out there in the country, right? And there's an only show called the Parkinson's Policy Podcast. reason we teamed up with Margaret. I consider her family in this fight, but she's still fighting. You we can't bring my mother back, but we can still fight for you two and also everybody battling and her family is currently battling. But Margaret's been someone who's not just been a friend, a mentor and a hero of mine since the day we met. And I started off, no one knew who I was and why is this guy who doesn't have Parkinson's and he's not a caregiver anymore even care. And it's because of people like you, Jessica, also Steve, your families, and of course, Margaret and her father. That's what really drove me and brought our relationship together. I'll throw the mic to her because she's really articulate, incredible, and drives me every day to want to keep doing this. That's awesome. Well, George, you set the bar high, so I hope I don't disappoint. It might be a whole lackluster after that. But everything that George said, I want to echo, met, as many of us in the business of Parkinson's met virtually in our ⁓ social media community, which is strong, loud, and so steadfast. ⁓ George and I met years ago, and I liked what he was doing. His mother had already passed, but he, to me, is a force within this space advocating every day for this community. Of course, we had the bond over both having a ⁓ parent with Parkinson's, my father, is about eight years into the disease. And we of course shared that bond, but we basically haven't looked back since the meeting between during interviews and advocating together. And now over the last couple months starting the podcast, of course, the catalyst was the national plan as we all were so pumped about that. They've finally put together the council and now it's time for action. So I think that's where our voices come in and kind of getting folks from at the ground level within this community and maybe even outside the community, start advocating for our community ⁓ because while the law is in place, there's still so much grassroots effort that is needed to really move the needle in terms of therapeutics and ultimately the cure. So Margaret, your background, it's in policy, right? Are you in the... I'm an accidental advocate. in corporate America and then my dad was diagnosed with Parkinson's so I knew nothing about the disease advocacy it was not my forte but now it's my life passion. So we again I call myself kind of accidentally in this space and now accidentally almost a lobbyist as I was at the Virginia State Capitol a couple times testifying for a bill to ban paraquat so I'm kind of in the space. So, you I'm learning with everyone, but you know, having eight years kind of experience within the Parkinson's community has provided me enough knowledge where, and of course having a parent who has Parkinson's is the driving force behind all this. And so I didn't have the background, but now I do. And I feel so passionate about doing all we can for this terrific community. It's odd because I've actually been in politics my whole life. I don't talk a lot about it because I've been on different sides. I worked with President Bill Clinton and Trump, but kind of left the world because of the negativity and things. And then I found this ⁓ area now. So I'm a DC lawyer in Florida. So I'm actually barred in Washington. But it's shocking that even in the Parkinson's community, there's a lot of, it's not easy to get these representatives. I just have to say you've had more amazing careers than anybody I know. I'm like every time you send your list and I'm like now you're in politics too, I'm like, holy crap. like I ever seats in degrees to show you. That's odd. It's just a hard one to introduce because he has many a title. Yeah, right. I only care about, know, sharing some. That's all it's really something you can do about, but I don't want people to have to keep fighting this and so many ways. Again, everyone sitting home around the country can get involved now. and I can never say that before, but it's not just going to DC. Margaret and I spent countless hours, which I think I just thought of Margaret, we should do a show one day, you know, kind of behind the scenes, maybe in a few years, because it's, we, I've tried, we both writing to every single U.S. Congressman, We're getting a lot of, you know, maybe they're not sure what Parkinson's is, we're getting nos. Of course I have a famous response to any no, which is not the... I try not to damage the reputation of power over Parkinson's, but for together, for sure, we don't take no. You know, I've been told no in my life, many fields and law enforcement and just got to kick the door down, not physically, but literally and keep fighting because if you believe in something like I do, I always swear until Margaret's dead, you knew both, I don't have to battle this, that I'm going to for you and right by your side and everybody listen. So I love what you guys have already started doing. And I think that that was really important. That's kind of what caught my eye. And I was talking to Brian about is like, you know, for your podcast, it has it's a very specific idea. But it's all it's talking to those in politics about Parkinson's and the different policies or like what we're trying to pass so that we can take action. But are there things that people can learn like us from watching it of like, what can we do? Like you're saying you're saying, mean, and you don't You just started doing this. started writing letters to different congressmen and educating them on Parkinson's or like having some sort of response. Like what can people like Brian and I or people that reach out to us to say like, I want to do something, but I don't know how to help or what to do. What are some things that they can do to take action to help you guys? What we've learned right now is that there's a lot of action at the state level. There's not a lot of regulatory. There's not a lot of emphasis on regulatory. from the federal level right now with the EPA and Paraquat, et cetera. However, there's many states right now with legislation that's up to potentially ban Paraquat in given states. So we just saw this, we went through the process here in Richmond in Virginia. Unfortunately, the bill did not pass its table till next year, but we don't give up. There's many other states right now with legislation. So I think the first step I would tell someone is to know their lawmakers and that's easily accessible. search based on your zip code and start writing them. If there's not legislation and there might be, but if there's not legislation already, talk to them about Paraquat, get some facts and all that's available. Of course, on Google, Michael J. Fox, you can quickly find ⁓ the connection between Parkinson's and Paraquat. Share with your lawmakers about Parkinson's. And if there is a bill of some sort formulating in your state, share with them your support of it and why they should support it. you know, it's very, I say it's very easy because we do have access to technology now, but it's very easy now to write letters. You can do it electronically. You could do it, of course, handwritten, which we have, George, we've sent many letters in the US mail and that works too. But I think, you know, from a grassroots effort from what you can do as soon as you listen to this show or our show, is identify your Congress people and then tell them about Parkinson's, tell them about Paraquat, talk to them about the link and start. It takes a lot of education. Start educating them. It might not happen this year, perhaps it's a possibility for next year. Someone can sponsor a bill related to this. And it takes folks such as yourself and our listeners to start it. So what do you say to people when they're going to experience the ⁓ like when I got an email back, sent, you I sent one from like when Michael J Fox was doing all that stuff and we were asked to send to our lawmakers. And so I sent a letter or I sent the email and I was so excited when I saw an email come back at some point, but I was like, ⁓ this is like a boilerplate. Like everybody gets this. So how do you make people feel like don't be defeated? That's normal. But here, what's the process that they have to go through to, so that, you know, like at some point you are being heard if you kind of keep doing it and doing it doing it. They can send them to us because we'll help support them for sure. We've we've been I'm really most excited to work with Margaret, but it took me one year. We had the former. It was still the current, but the director of the NIH, which is not an easy. That's right. You had him. had him on Walter. He's an incredible. We've had a Virginia representative. We're having, I believe, I hope, New York, California. My dream would be to have a representative from every state. And then once we have that foundation to get more senators, US, I've had US Senator Rick Scott from Florida support us tremendously. We've had, I've had, and we're gonna hopefully have eventually Paul Tonka, who's one of the actual sponsors has become close friend of mine. He's endorsed my recent children's book, that's how supportive he's from New York. Bill Arrakis has been incredible. So my hope in Margaret is now really the state. I think we can make more. impact on every state and imagine a show from a representative from every state. if someone, know, like Margaret mentioned, we message on social media, email, written call, I've had so many voicemails that they don't call back, but you can't just kind of, you know, we could all say, all right, let's close the door and forget about when we're not to bring it. So I would recommend they reach out to us and we'd love to have them. We support everybody out there in the community and people who aren't aware to. forces everyone, it's not just the show. The thing I love about the show, not to be biased because it's our show, but again, I personally haven't seen a show. We have great shows, yours are loved, my favorite. I'm always happy to see how many people supporting this show and I always share it every time I can. But there's nothing where we're only concentrating literally on policy, but having actual representatives, having literal, maybe Margaret could touch on the environmental groups who are phenomenal. leading the way to band power choir, they're coming on the show. We're have some major organizations like APDA policy division, Arkhamston Foundation policy division, hopefully Michael J. Fox policy division, but we really wanted this to be kind of our venture on our own and we love all the support, but the only way to get it done is to keep pushing, open the doors, never give up really. So if I could. If I could just dovetail really fast. I talked about heading to the Capitol here in Richmond. So a year ago, we created with our foundation, Parable of Parkinson's, a Parkinson's Advocacy Day. So just a response to your question, I think what we did was not rocket science. Anybody could do it. We simply got some folks with Parkinson's Care Partners, a little group. We secured a lawmaker to sponsor us, and that could be anyone's representative within your group. And then you create a advocacy day. You go to your state capital, set up a couple meetings with lawmakers. You could potentially get into the general assembly or however it looks in your state and kind of create that little bit of awareness. Because that's essentially, I think at the foundation level, that's what you want. You want to create the foundation education about the disease. So yes, it's sometimes a little disheartening getting an email back that's seemingly canned. But there's still action to be had. can kind of create your own little advocacy day if you get a couple people along with you and secure a couple meetings and potentially have that couple hours at your state Capitol to create awareness about the disease. It's also, it's not just state, too, and federal, noticed I had the mayor on. I'm actually speaking the second year in a row at the city commission. So different counties, you can locate. your county commission office, if the county or city or mayor counts city council. So people don't for some reason think about it. But if we start at the local level, then the state and the federal, you're to see somebody respond at some level. And, you know, not to get off topic, I wanted to help PD Avengers light up a monument here in South Florida. It was impossible, but somehow some reason, one of the city commissioners had been on my show. And she literally now we're lighting up a courthouse, which is going to be cool. I would never have been done. It wasn't for the kind of, ⁓ you know, introduction. connections. whatever happened to the building in Parkinson's, guess. Do you guys have any insight on that? We're lucky to have a friend. my friend who's, on the council. So we, I don't know how they said that's announced the committee, but we can't, I can't find it. So I actually had the honor to be at 40, four zero nominations, but to this day never heard back. I guess that means I'm not selected, which is fine because I'm probably better off fighting. There'll be a lot of rules. But as of today, I only know one member. I don't know the others we've been trying to find out, but they did say they seeded it. However, I haven't heard anything. That's one thing we're going to be definitely investigating. The biggest thing is really the national plan. What happened? Where is it going? How do we move it forward? Number two, of course, any toxic chemicals, not just Paracuip, things in there, know, fruits, vegetables at the dry cleaner. And then the third is also veterans rights. And as you know, very passionate about law enforcement and the lack of awareness throughout the country. There's a lot of policy. Of course, Margaret too has many ideas and the show is not really just one thing. That's why it really can encompass so many different areas of policy that never have been addressed in the past. And we're in the time again today. where everybody with the internet can be a part of it. Yeah, because it seems like we finally get that bill pushed through and then it just stopped. Yeah, mean, that's why Dr. Dorsey and Dr. Oken wrote that book. It's like, OK, here's the plan. This was put into supposedly action, but there was no action that was taken. So then they wrote the book. And now, like George said, what's it called? Like the panel of people or? the council. changed the name to the now it's was an actual Parkinson plan, but now it's the council. that's why, you know, Jessica and I met in DC to for that. And that's why Margaret and I'll be joining the Michael J. Fox and honor to both of us to be nominated or to be invited there back. Hopefully I didn't scare them the last time. I'm back. But that was a powerful day. It was overwhelming. I remember you had a minute to speak and I kind of so tired by the time I got it, I just winged it all. We did a great job winging it. Even in the rooms with the representatives, ⁓ unfortunately, South Florida, I'm always honest, it's kind of disappointment. I think everyone in there, in the building, makes a huge impact. But my specific area kind of was upsetting because I met with about four or five offices, but none of them, even after follow-up, even would come on my show before Morgana. So it's hard. I don't know why you can't get three to five minutes. virtual. don't have to leave their office, but we have found people who do want to. And again, it's an honor. I feel bad sometimes with Margaret, you know, me, I'll get an idea. We find some clipping and I'm like, this person is so important. Let's get them on. And then I'm texting and emailing her 24, thankfully I love her husband. He probably wouldn't want me to. ⁓ I actually just thought of Melissa, make note of this. ⁓ one of the members that are Jim is actually really well connected with a lot of, ⁓ a lot of the representatives from Ohio. ⁓ So we can see if he can reach out to connect with you guys, because I don't really know. I know Ohio, I think their overall stance, want to, at least I want to say this is, is in the positive realm, like to help with Parkinson's because we're, which is still taking like two to three years. ⁓ The Parkinson's like, I don't remember what it's called, but when you make a record of it, right now doctors registry. Yeah. So we just, we, I think we've had it signed or passed or whatever for like three years and I'm on that panel or council. like literally it's like, know, know Liz is about Joyce Beatty a couple of different times. really? Yeah. Okay. Yeah. We'll have to see who we can connect you with. That would be awesome. But you know, who is on that council is Dr. Sarah Whittingham. Did you get to meet her yet? Or did you? She's a friend of mine. want to say names unless you want to say. ⁓ sorry. I mean, she's out there with her. I mean, she put it out there on social media that she's on the council and she just wrote the book. ⁓ crap. It's Parkinson's, which I love. I wear the socks. I know. I saw that. I did. She did ship it to me, so I need to put those on. But like, so she's going to be the Parkinson's like the young onset Parkinson's person on the council. They're only having like one or two representatives. on it, but so that's why I know that at least there is movement because she's posted that she's part of the council. What? And she'll be a guest of ours very soon. I do want to say that, like you just mentioned, and I hope everyone listening, if you have trouble again with a representative or even know someone who's positive, send them our way. My dream again, I'll repeat it, is just that one, at least one representative, it could be state level from every single state in the United States. And that won't take that long. We've been getting incredible help from Pennsylvania and Virginia. I don't know what it is about those two, but to me, they're the leaders. And finally, we have California coming, I believe, maybe New York. But again, we would like to don't want to share all the secrets of the secret show. Well, it's possible, though, that West Virginia and Virginia are coming in and hopefully Ohio does too, because that we're called like the Parkinson's belt. Because there's so much industrial stuff that there's more people with Parkinson's living here and in California than I think anywhere else. it makes what we're doing and what you guys are doing too so important because we all are kind of scratching our heads as to where, you what the status is with the national plan. It's going to take our collective voices, I think, to kind of say, hello, we passed this law. Now we need action because what good is it otherwise? And remember, you know, we are talking state level, you know, encouraging folks to talk to their representatives at the state level, but of course they have their federal representatives. who they can also write and kind of stay on top of as well. And I think, you know, that's another item that someone can take as it relates to kind of moving the national plan in a forward motion, finally. Doesn't Senator Booker have some tie to Parkinson's? His father, I believe, or maybe mother, but yeah, one of his family members and my close friend, Tim, my PD party, I love him. We had a sports show together. That's a different time for him. He had an honor to be in the office alone with him and they had a beautiful moment. was on Instagram. The sad thing about the National Plan is I did about 100 other people's podcasts and nothing to do with Parkinson's, just to go on other shows around the country to explain what it was and to get awareness from people not in the Parkinson's community. I remember being on the phone with Ali Signorelli and we were both crying at Target. She was on a call when it passed and I was so happy because I think my mother would have benefited from it even though she can't. But then to see again a year now more nothing is kind of shocking, upsetting and that's again motivation for both Margaret and myself I believe to get this going and we have some incredible, I hate saying because I like you know surprised with some of the shows that coming and guests are just... ⁓ Unbelievable, but not easy. But to me, the NIH one, I wish we could keep sharing that show because to have the director of this whole thing is very important. Even if he's not any longer in, he's the only reason that actually passed and went through. We might have the former associate director of the NIH. So we're getting guests that are very important. I do hope someday again when we build our guest list and when we have been on for a while, we'll have... US senators and US representatives. But for now, again, I think the best thing is the state level. Yeah. Well, that is awesome. I'm so appreciative of the work that you guys are doing ⁓ and getting not just to bring awareness to like how to be an advocate in your state, but then also to reach out to those state members and, you know, hopefully, you know, even the federal level, like just to get things moving and because the more you talk about it and the more that educate them, like you said, there's so much lack of information and lack of education at almost every level with those that don't have Parkinson's or don't have a family member dealing with it to know anything about Paraquat or to know anything about any of the other toxins and the pesticides and whatnot, and to know what we're dealing with until you talk about it. So thank you guys so much for all that you're doing and looking forward to seeing. all these great guests. And I will definitely pass along ⁓ names or either contacts or information or something like that if we can ⁓ get in front of the Ohio ones. I wanted to thank Margaret for all the work she does behind the scenes and in front of the camera. And also Adam from Power Over Parkinson's, couldn't do without him. And especially, of course, Steve and you, Jessica. You're definitely family. I'm honored to have been able to hug you a few times and also feel some days to cry together, laugh together, but we're all in this family and anything we can do for everybody out there, know, count us in, but it's not easy. There's a lot of days like Margaret has to deal with me because it's frustrating getting an email from a Senator saying we have other things that are important. like, wait a minute, my mother still matters and all the people. in your own constituency matter, maybe we should vote you out. It shouldn't be like that. should. I see them make time for things and it's shocking that they can't make a few moments for us. So we'll definitely make this positive, flip it around from the negative and get the people who do care. And again, I hope it grows and everyone ends up being a part of this special moment and grateful for everybody and all your community. love your show. Big fan, I need a shirt that says, Seeker Life of the Parkinson's. Oh, we do have those. So, have to wear them. Then meanwhile, we'll send you some. I'll wear that everywhere. Well, thank you guys so much for what you're doing and lending your voices because you do not have to, but you've chosen to do that and it's so appreciative. Yeah, absolutely. Well, thank you guys so much. In our last 30 seconds, I will leave you with this. It doesn't matter if you're the one dealing with Parkinson's or you're the caregiver or you're just even a friend, but everybody can have a voice. Talk to your state representatives and just, you know, make sure that you're sharing this information, educate them about Parkinson's and all the things that you are aware of. And let's try and make this movement and get some progress on a cure for Parkinson's. So with that, we'll see you next time.