Parkinson's Policy Podcast: Senator Alexis Calatayud

In this episode of the Parkinson’s Policy Podcast, we sit down with Florida State Senator Alexis Calatayud (District 38) to discuss a massive, historic legislative victory for the neurodegenerative disease community.

Senator Calatayud championed SB 1800 (The Parkinson's Disease Research Act), a landmark piece of legislation that passed alongside its companion House bill to officially establish the Consortium for Parkinson's Disease Research within the University of South Florida.

This historic package brings together public and private state universities, researchers, and academic medical centers into a collaborative powerhouse. By pooling resources and medical expertise, Florida is firmly establishing itself as a premier national hub for neurodegenerative health, innovative therapies, and the ongoing fight for a cure.

In this episode, we discuss:
- The inspiration behind SB 1800 and what it took to build bipartisan momentum.
- How the new Consortium will transform medical research, study genetic origins, and accelerate therapeutic treatments.
- The critical inclusion of research regarding Parkinson's prevalence among first responders.
- What this massive win means for Florida patients, caregivers, and the future of healthcare policy.

Connect with Senator Alexis Calatayud
- Website: https://www.flsenate.gov/Senators/S38
- Instagram: @Alexis_Calatayud

Transcript

SPEAKER_00 0:11

Welcome everyone back to another episode of the Parkinson's Policy Podcast. Here we advocate together to raise awareness and advance meaningful policy for the Parkinson's community from Washington, D.C., straight from the U.S. 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, sharing son and founder of Together for Sharon, along with my co-host Margaret Preston from the president of Power Over Parkinson's. And welcome back, everyone. This is a really incredible episode because it's about, in a way, Florida and trying to bring every state right to your uh fingertips. So here we go.

SPEAKER_02 0:55

Yeah. Well, Senator Senator Alexis Calatade is a Cuban American representing 550,000 residents of her hometown, Miami, Florida. She's the youngest woman to ever be elected to the Florida Senate and serves as the vice chair of the pre-K-12 Education Committee, as well as the chair of the post-secondary education committee. She has served for over a decade in advocacy, policy, and campaign roles, supporting Florida's education champions and advancing transformational educational policies throughout the birth, throughout birth to workforce spectrum. Her legislative and professional work is centered around building and expanding educational opportunity and economic upward mobility, ensuring the American dream promise remains attainable and affordable for the next generations. Concurrently, she acts as the community engagement and public policy liaison for early learning coalition of Miami-Dade and Monroe County launching national learning exchanges and building special local initiatives. Previously, she served as the chief lobbyist at the Florida Department of Education during the COVID pandemic, where she was responsible for advocating for the future of the state education system to the Florida legislature. She holds a bachelor's degree in international relations and political science from Florida International University. In addition to the local community engagement, she currently serves as a trustee member of the public health trust of the Jackson Memorial Health System, Miami's public safety net hospital, one of the largest in the United States, and previously served two years as a trustee member of the Florida International University and expanded geopolitical interconnectedness can look like, and explain that what it can look like. So, you know, Senator, we're so thankful for all the work you've done to support those Libanith Parkinsons, as well as you sharing your time here on podcasts.

SPEAKER_01 2:44

It's my pleasure. Thank you so much for having me.

SPEAKER_00 2:48

We have so much in common, even more than any of the other guests, because we're down the block from you. And my wife just graduated from FIU recently, and also hearing the word Miami. It's just again so close to our home. And uh I just was wondering, as you we've spoken, I've had an honor to meet before. You've told me a lot about your background, but for our uh listeners today, what encourage you to get into this line of work, specifically uh bringing awareness in the state of Florida for Parkinson disease? Sure.

SPEAKER_01 3:17

So my general background, I've served four years in the Florida Senate, representing my hometown, particularly southeast Miami-Dade County. And I've always been interested in affordability and access, whether that's in healthcare or that's in educational opportunity, or in the general affordability and cost of living challenges we uniquely face as a state post-COVID. So the intersection of my priorities, and I think that that my community sent me to Tallahassee to prioritize, um came and intersected with advocating and um working to further advancements in Parkinson's outreach support and treatment with the partnership I have with our local state representative that overlaps with my district, Representative Demi Busada, and her championing of um the creation within the University of South Florida of the Florida Institute for Parkinson's disease, and ultimately the registry that we've created, um, and trying to um direct state investment into the most meaningful way to um supercharge research, outreach, uh support, and create a network of um interconnections from the the people who are supporting families, um, the people who are delivering cutting-edge research into treatment, and the the ecosystem in Florida, which happens to be one of the largest. Um there's also significant investments happening within this space at the University of Florida. So it's really finding the way to maximize all of the leverage that the state has already made in investments and link them together with the private, with, with the uh nonprofit sector and the philanthropic community to the families who benefit most for these supports. So for me, it was a no-brainer to invest uh the voice of my community that I've been honored to represent into being an activist and an advocate in this particular space. Um and in terms of uh neurodegenerative diseases, there there's Florida's kind of a um a ground zero, particularly for our expanding um senior population. Um so it's also the right place, right time, right people. And I'm happy to be a partner. I'm really um I'm honored to learn uh from folks who have been committed in this advocacy space for a long time and to lend my voice um and the role that I play in furthering the initiatives that matter.

SPEAKER_02 6:24

Senator, yeah, go ahead, George.

SPEAKER_00 6:27

No, it's just a matter of uh fascinating because of the timing. You know, the policy has really taken over federally two years now, but to see it in my hometown and our hometown in Florida means the world. I'll send it back to Margaret.

SPEAKER_02 6:40

Yeah, Senator, I'm uh just amazed at the ease that you in which you speak um in terms of the way you've uh created these synergies between different entities, the public and private, um, of course, the nonprofit space. Um, it's just incredible the work. I think you're downplaying your involvement in terms of a learner. And I'm sure you have been a learner and experience, but we need folks like you who can kind of see the act as a hub and create these synergies between these entities. So kind of the magic happens and it only impacts the patient. So thank you for sharing that and kind of seeing uh taking a complex, sometimes bureaucratic system and kind of bringing it together and creating the this connectedness.

SPEAKER_01 7:24

Of course, of course. I think that's the job.

SPEAKER_02 7:27

If you're not doing that, you're not doing it right. Well said. Well said. Um, I wanted to elaborate a little bit more on SB 1800. This is the bill that you introduced and was ultimately passed with its companion legislation in Florida for those outside of Florida, such as myself. Um, these bills created a truly historic moment, of course, for Florida and for those living with Parkinson's and other neurodegenerative diseases, um, really making Florida a hub for neurodegenerative health. Um, can you explain what led you to champion uh this legislation that would establish the consortium for Parkinson's disease at the University of South Florida? Yeah.

SPEAKER_01 8:05

I mean, it was exactly what we just mentioned that we have investments taking place across the state. We have support groups happening across the state. We have many patients and their families acting as um as caretakers as the necessary and essential elements of care that are above and beyond the medical system or the healthcare apparatus itself. And we needed a place not just for research to be continually cultivated, but for all of the elements of interconnecting service, not just research, service therapies. Um and what happens in in kind of um, and I'm I'm losing the word right now, but it it's um it's also the support for the individuals who act in care of the patients of Parkinson's and other neurodegenerative diseases. There's also tremendous need for them to be a part of the conversation of what we're doing and leading in Florida. So the consortium was was to to become the hub of spons of all the stakeholders across the state. Um and then also to uh share to the legislature and the executive branch a plan um for research annually and to award funds to members of the consortium to perform the research that's consistent to that plan. And that's continual funding that we're championing in the legislature, and we're working on additional funding this year.

SPEAKER_02 9:49

Thank you.

SPEAKER_00 9:52

Now you went over it, uh, and of course, it's something I follow because it's again kind of heartfelt and happy in a way when I see our legislator here in Florida discussing Parkington. I had the honor to speak at the Palm Beach County Commission meeting on this issue just a week ago, and it's uh really important, not just even in state level, but city, county, federal that we all join together in this mission. How do you think we can also uh look and advocate for more increased resources and support, as you were mentioning, for families and caregivers for people with uh living with Parkinson's who often face a journey like our family who kind of felt alone? And again, it's been in the last six years since unfortunately we lost my mother. But like I said, I was so excited to meet you when we spoke last to see that you're all you know sponsoring bills, which is shocking because uh that's really what I always dreamt of. So, in a way, thanks for like uh making dreams come true, even though it's you know late for my mom. We still know how important it is to uh fight for this community together.

SPEAKER_01 11:01

Yeah. Um no, I mean it to me the the importance of the work is um every family who can have who who can have just a bit longer with with their loved one. Um and making sure that strategically what we do to advocate for that is as a community of people understand that the appropriators of the legislature are those who decide what the final budget looks like. And so our chairman of appropriation this year and last is Ed Hooper. So it's um trying to understand how to share with the chairman why this issue is so important. I think it's connecting him with um family members who are advocates. I think it's identifying if there's any set such families that are his constituents that would be willing to have a constituent meeting with him. I think it's identifying similarly the healthcare appropriations subchair, Chair Trumbull, um, giving him the same opportunity of meeting with constituents who can speak to the importance of this funding and for the next tier of investment that's necessary. I think it's looking at the individuals who sit within the appropriations committee or the sub-appropriations committee on healthcare and helping constituents in their area also plug in and have meetings with them and talk about why this funding matters. I think constituent level advocacy is one of the most powerful. And with the vast number of individuals who are affected, um, not just patients, but family members and community members impacted by Parkinson's, there is a real opportunity to support individuals in sharing their story, in taking the next step and meeting with legislators and particularly focusing on those who are appropriators.

SPEAKER_00 13:09

Thanks. One thing I am hearing in the rumblings, which is a positive, that we might try to mimic in a way the federal day where everyone meets for the public uh policy forum. But we're gonna actually try and do it in Florida and every state in the future. So hope one day to be able to advocate next to you, literally by your side. So Tallahassee also needs to know we have a lot of obviously we live through you and our representatives, but I think sending a message with all of us there, the actual people Parkinson's and advocates and caregivers together could really make an incredible impact. I can't believe we haven't had in Florida, but please keep me in mind if it ever does also come true.

SPEAKER_01 13:48

Well, I would tell you, um, while a Hill Day is a concentrated uh big spoonful of advocacy, I'd say teaspoons in the district of constituents asking to meet with their elected officials at their local office is sometimes far more valuable because at home they're not rushing between meetings. They don't have a stack of 27, 27-minute meetings because they do value their constituents and they want to say yes to everybody. What that means is the conversations are brief. And so I think it would be wonderful to also have an advocacy day in Tallahassee. The most powerful advocacy that I remember and have 30, 45 minutes, an hour with my constituent is in my local office. Because if I have three two and a half hour committee meetings in a day and I have 10 constituents visiting me in Tallahassee, I'm gonna say yes to every constituent, and I'm only gonna have five minutes.

SPEAKER_00 15:01

Um I'm gonna have to head to Miami then.

SPEAKER_01 15:05

Yeah, well, for for me, right? Like I I'm on the team, but what I think's valuable is for constituents of a house district or a senate district to ask for a meeting to express why this matters to them, to their local representative. And they'll have a time window that's just simply not possible in Tallahassee to express and share their story.

SPEAKER_02 15:32

I think um, I think I speak for Georgia as well, my as myself, of course. Um, when I say constituent, what we're trying to create on this show is an emphasis on constituent level advocacy. Um, I think George and I, through this show, are really trying to not only educate folks on what's going on with policy, but also how folks can do these little bite-sized, meaningful meetings right in their local um area with their representative, no matter the state. Um, so I think your emphasis on that and um, you know, kind of uh articulating its importance as a lawmaker and how it's important on your side is really kind of one of our missions with the show is to try to instill a little bit of action in our listeners to say, hey, I can do this. I can, you know, ask for a meeting, I could just share a little bit about the disease, start educating and laying a foundation with my lawmaker who might not know a lot about the disease.

SPEAKER_00 16:29

I think we might we might have just found our new introduction to the show. Thanks, Mark.

SPEAKER_02 16:34

Thank you, Florida. Um, let's move on to kind of talking about other states who haven't, you know, taking so taken such large uh impactful measures. What would you like to tell lawmakers and other states about the impact of Parkinson's disease and its importance of uh and the importance of state level action to support neurodegenerative uh neurodegenerative health?

SPEAKER_01 17:02

Every investment in research for particularly for disease states that are only climbing in their impact and their socioeconomic impact is a good investment. Yeah. And we are soon to be experiencing the full uh the the full active aging of the of the boomer population of the baby boom, and we are not prepared for it. So these are one of the strategic decisions in investment of state resources that if you don't make, you will experience the second and third order effects of. So whether whatever is the motivating principle, if it's simply the the sheer reality of the future budget situation with the demographic changes happening and the increased percentage of um neurodegenerative diseases um affecting the aging population, if that's the motivation, act. If the motivation is this the reality of many, many families that you represent are experiencing day to day, and there's a way to make that quality of life better with investments in research, investment in outreach and support, take that path. But whatever would motivate a state legislator, and they can be either and both. Um, there is a deeply compelling reason to make state-level investments in addition to what's happening in the philanthropic uh nonprofit sector and in the federal public sector. No, that's very well said. Thank you.

SPEAKER_00 18:46

How do you think we can improve awareness and early diagnosis for many communities who might not have the access? You know, my wife is Cuban, our half, our kids are raised half Cuban, half Jewish, but uh it's really important, you know, to also reach those who might not be aware that they're even uh battling Parkinson because they're not sure who to go to, what to access. And uh on a follow-up question, which I don't know if you can discuss, but curious if Florida has ever talked about or looked into banning uh paraquad and other toxins that can be harmful through landscaping, golf courses, and everything surrounding me as we're sitting here now speaking uh through uh, you know, and even supermarkets, but it's a big movement. We see it uh now Virginia and also Pennsylvania. And I wonder if Florida will get involved with that.

SPEAKER_01 19:35

I've actually carried legislation that was to originally ban different toxic chemicals. Um, it was primarily in personal care products that we were angling at first because you put them on your skin. Um we had tremendous difficulty with um that policy. And then subsequently we pivoted to the uh notification on labeling of items in a more prominent way that there's potentially endocrine disrupting or uh carcinogenic chemicals, even in trace amounts within these products. So that was another vehicle we engaged with. Um so far, neither of those they so they passed the Senate floor but did not have a house companion. So it's not an initiative that I will probably take up again unless I have a willy house partner. Um, because I already showed up to a dance and then didn't get a dance partner on that one. So um I think there's very fertile ground for continued discussion on what to do on toxic chemicals. I think there will always be, because it is the role of government to regulate private industry um to create balance to support uh community safety. That is our number one responsibility, whether it's from international threat or domestic threat. There's something that harms people, we should be responsibly analyzing and understanding what course of action uh we should do to protect people. So um I say both of those things to give background into this is actually something I've worked on, but I've not received um support necessary to move forward a product that the uh the House of Representatives considered. Um I think there will be a continued discussion going forward, especially in the midst of the Make America Healthy movement and the question of the role of local, state, or federal government in tackling tackling the regulation. of chemicals that are not showing that are either showing significant detrimental impacts to human beings or have questionably uh negative impacts. I think both are really relevant. Um I don't know what comes next on that space, but it is something that I care about.

SPEAKER_00 22:22

I really appreciate your honesty and your fight because uh it's important even to know what struggles you might be having or that didn't pass because I hope everyone listening will get on board because we need everyone's voice to also support the work you're doing. So I want to thank you for that. As we uh wrap up I will show uh send the show back to Margaret but do you have any words of encouragement for the Parkinson's community and not just Florida but countrywide?

SPEAKER_01 22:49

Yeah. Um if you put your shoulder down and run into a wall long enough the wall comes down.

SPEAKER_00 22:59

I don't know if we could follow that that was amazing. We're both that's really well said.

SPEAKER_02 23:05

You need a t-shirt we're overcomplicating everything when we just had that line. Senator thank you so much for everything you've done for the Parkinson's community in Florida. We hope uh those watching out of state can can take such measures as you have done to support those living with a neurodegenerative disease in their given state um as someone who has a loved one my father with Parkinson's this is what it takes. We need passionate lawmakers who can simplify things break things down all to benefit the patient and patient and their family. So Senator thank you so much for your work and sharing your time with us.

SPEAKER_01 23:48

It's my pleasure thank you Margaret and thank you so much Dr.man I'm so grateful for your time and your advocacy um anytime you need me just let me know. Thank you. Thank you.

SPEAKER_00 23:59

We appreciate it and I want to thank you uh also everybody listening of course I have to again get my bias out. This has been amazing because again it's Florida and you know we always talk about how we need Florida involved and knowing that you are out there fighting for us all means the world and I hope everyone else will support you listening and other representatives will also join you and get some of this important legislation back out there and uh at the really uh forefront of our issues here in Florida. I was actually when I was at the uh uh commission the other week I think they were celebrating like Agriculture Day and the the head of it was there and I didn't want to attack him at the then but there was also a gentleman or a female I'm not sure dressed in a giant thing of corn. So it was definitely a celebration but as they were celebrating I was kind of in my back of my mind thinking are they also thinking about these issues because we want everyone to enjoy the uh amazing agriculture in Florida but we also don't want to lose individuals due to some of the sprays and things. So this uh again after we close the show it's still a conversation that's growing continuing and again I'm confident have hope because we have legislators like yourself in there fighting for us that we'll make progress. So thank you again. Thank you Margaret want to send love and thanks to Adam and the entire staff of POP because without you this show also wouldn't be uh what it is and it's becoming it's just uh massive how uh impactful policy is today. So we also especially want to send love and thanks to our audience to all of you this amazing community worldwide and 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 and I guess I I just have to say how inspired I am after every show. You know even on tough days when we all have health life and things going on and some days feel like I might have you know we've done enough for too much and then all of a sudden we meet the uh senator and realize that we're just getting started. So thanks everyone thank you all and we'll see you soon. Thank you