Episode 4: Celebrating a Historic Year of Advocacy With Jessica and Julie

Jesscia: On that Friday, I was like, “What just happened?” It was one of the most energizing weeks I've ever personally been through, but hearing from our community and the excitement of this platform that we now had was just extremely powerful.

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Oscar: After years of advocating for the National to End Parkinson's Act, the first ever federal legislation dedicated to ending Parkinson's disease and related conditions that specifically named PSP, CBD and MSA, the CurePSP community celebrated an unprecedented advocacy win in 2024 when the bill passed through the Senate and was signed into law by President Joe Biden.

For decades, those affected by PSP, CBD and MSA felt siloed in their experiences — seeing doctors who are unfamiliar with these diseases, let alone any acknowledgement from politicians. That began to change when the National Plan to End Parkinson's Act was introduced to Congress in 2022 and gained rapid momentum when Congresswoman Jennifer Wexton announced her PSP diagnosis in 2023. Months later, the bill passed unanimously through the Senate thanks to Representative Wexton's efforts and the numerous messages that our community members sent to their local representatives.

While this was not how representative Wexton imagined her tireless career in Congress to end, she would leave a legacy of resilience and grace, becoming a champion for a community that will always be grateful for her unwavering support.

This was a whirlwind year of advocacy that we at CurePSP are still trying to make sense of. To dive deeper and see where we go from here, I spoke with two of CurePSP’s most dedicated advocates, Jessica Shurer, Director of Clinical Affairs and Advocacy, and Julie Balasalle, long-time volunteer and macro social worker with extensive professional experience in legislative and community advocacy in both the US and Canada.

Julie's mother was diagnosed with CBD in 2022 which prompted her to use her social work background to seek ways to raise the profile of a disease that suffered from a severe lack of awareness. Julie coincidentally connected with Jessica just before the introduction of the National Plan to End Parkinson's Act, which meant that their first project together would be to help people understand the bill and its impact in a succinct way, harnessing the energy and knowledge of community members who were no strangers to advocating for themselves.

Now that the National Plan to End Parkinson's Act has been signed into law, we dive into how we got here and what comes next.

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Oscar: Julie, could you tell us a bit about your background in social work and how you personally got connected to CurePSP?

Julie: Yeah, so my name is Julie Balasalle. I am a social worker by training, but the majority of my work has been on the sort of macro policy, community organizing side of things, and I've done a lot of legislative lobbying on the state level in Massachusetts, where I'm from, so my background is largely in legislative advocacy and community organizing. I did some union organizing, and have done a lot of work around mental health policy, and I got involved with CurePSP because my mom received a probable corticobasal degeneration diagnosis in March of 2022, and after a long, windy road of not really knowing what was going on with her and a really awful disease progression, she passed away in January 2023.

So after her probable diagnosis in March 2022 I reached out to Jessica. I Googled like, “what is corticobasal degeneration,” found my way to CurePSP, and started emailing with Jessica to see if there was anything I could do to support the organization. And I basically said, like, I'm not a nurse, I'm not a doctor. I don't know how to make any drugs, or, you know, prescriptions, or anything like that, or scientific research, but I do have a lobbying background, and if that's something that would be helpful for CurePSP, I'm happy to help. And so I just really wanted to feel useful and feel like I was doing something to help people like my mom and people living with these diseases.

And so Jessica and I started talking about advocacy, and what the organization had been thinking about getting involved in advocacy, and it was really great timing for us to connect. And pretty soon after that, there was a big push in Congress to pass the National Plan to End Parkinson's Act. So we really hit the ground running, having theoretical conversations about how we could start to build an advocacy program within CurePSP, to all of a sudden building an advocacy program for CurePSP. So it was a really exciting time, and it was such a wonderful way for me to feel like I was contributing something to help our people and our movement. And yeah, I don't know if that answers your question. Jessica, did I get that timing right?

Jessica: Time has no meaning anymore. We'll probably dive into the timeline a little bit more as well.

Oscar: Jessica, you have a pretty extensive social work background, what drew you to advocacy work at CurePSP? And your role is Director of Clinical Affairs and Advocacy. How has that changed over the years?

Jessica: So yeah, you sort of named it. I also have a background in social work. Like Julie, my master's is in social work, but I had, prior to joining CurePSP, three years ago to this past week, happy anniversary to me. I had been working clinically with people with PSP, CBD, MSA and Parkinson's disease, among other neurodegenerative conditions, for about 10 years in outpatient neurology. And so I had a very good sense learning from this community of how they advocated for themselves — when navigating the healthcare system, when trying to get a diagnosis, when trying to understand and define their own priorities and let their family members or healthcare providers know what those are and what they needed out of their care. And I also heard from them a lot about what the gap from the needs were, especially when it came to people with PSP, CBD or MSA, I heard a lot about the sense of isolation that comes with a rare disease that that no one's ever heard of, even some of their health care providers had never heard of. I knew that this organization had a really good history of advocating on behalf of and alongside the community, but mostly in the realm of empowering self-advocacy, of educating people with the diseases and their family members educating healthcare professionals. But I always knew that we needed to layer on the larger scale advocacy efforts and add a new definition to what that meant for our organization, which was general community awareness as well as public policy and legislative advocacy.

But I will always be the first to admit that I don't have a background in that. As a clinical social worker, I had and still have a lot to learn. And you know, along came Julie being proactive and wanting to do something. And a lot of what we've built over the past one, two, three years has happened really organically, which has been really exciting. And I also know we have so much more to do, and I know that our community has just been very moved to see that we've redefined, or added a new layer, I suppose, of advocacy for this organization.

Oscar: Yeah, like you mentioned, it's more advocating not on a national scale like that. It's more like advocating to your doctor and for yourself. Did you have any ideas of what even a government or national advocating would look like?

Jessica: Julie had much more I did. But I think that's how Julie and I really complimented one another in terms of our roles with this. But Julie, I'll let you answer that question.

Julie: Yeah, I mean I think in caring for someone with a rare disease that's a fast progressing disease, you learn really quickly how to advocate. I used my professional skills when I was advocating for my mom, because it was sort of like a natural progression. And so part of what I was thinking about was what I could do to support the community. A lot of the people who are caregivers or people who are advocating for themselves, like you mentioned Oscar, on the micro level, like in the self-advocacy realm, in the healthcare system and in the insurance world and everything like that. How do we transfer all of that to talking to legislators? Because I think that's where there's such an obvious connection. And so, how can we empower people to feel like they can have these conversations? Because a lot of people are afraid that they're doing it wrong, or that they don't know every single intricacy of every single bill, so they can't talk to a legislator about it, when the reality is that legislators work for them, if they're your constituents — or you're their constituents.

So I think a lot of what I really wanted to do was help CurePSP think about how we could create a program that would empower people to use those skills in a different way, and to give them an outlet for raising awareness with with people in policy and legislative positions, because it just wasn't when you're in the thick of it. As a caregiver, it's like hour, minute by minute, hour by hour, and so, how could we make this as easy as possible for people to continue in their role as someone caring for for someone living with PSP, CBD or MSA, but also someone living with those diseases or receiving this diagnosis, being able to participate in a legislative advocacy program that would empower them, but also start to really set the understanding about what these diseases are to people who are in positions of power.

So when I first started talking to Jessica about it, it was really more about how can we build something that can really impact the community in a powerful way, while also informing legislators, particularly on the national level, like what this disease is and how it impacts people who live in their districts, and what they can do about it. And so it's sort of a multi-faceted answer, but I think there's a lot of really important work that has nothing to do with legislative policy.

In legislative policy it's also about the experience of empowering people to tell their story, and having a mechanism for them to do that and support for them to do that. So I think it was sort of a dual focus for me.

Oscar: Yeah, and there was this bill that was passed over 10 years ago that feels kind of like a blueprint for the National Plan to End Parkinson's Act, the 2011 National Alzheimer's Project Act, which made advances for developing and funding research and treatment and cures for Alzheimer's and related dementias.

And Julie, we've talked about this a bit in the past, if you could just tell me what you or what people learned from the success of that bill?

Julie: Yeah, so I think the sort of movement that needed to happen in order for that bill to pass is an incredible way of looking at how legislative advocacy takes a village. With that bill being sort of the blueprint for the National Plan to End Parkinson's Act, it was the premise in that it creates a council within the Department of Health and Human Services to look at the disease and come up with recommendations. So it's sort of like the government telling the government what the government needs to do to cure Alzheimer's, instead of a separate organization coming in and saying that.

So I think the biggest thing is it creates a sense of urgency, and also in terms of funding, because the first step is really to raise awareness about Parkinson's, and then look at it from from lots of different angles within this council, and then go back to Congress and say, “Okay, we've looked at this. This Council's looked at this. This is what we need to do to really make an impact in curing, treating and supporting people living with this disease, and this is what we need to fund it.”

So the first step doesn't appropriate money, and in some ways it creates buy-in in that way, because it doesn't appropriate funding to do those things. The second step is to look at the sort of state of the disease within the federal government, all the federal government agencies, across stakeholder groups. And then come to a consensus about what funding would look like in order to increase treatments, cures, research, support for people living with the diseases, caregivers across that spectrum, and then go back to Congress and say, “This is our recommendation to be able to fund this, and this is the amount of money that we need.” So it creates a level of accountability, because Congress asked you to do this by passing this bill, and then you do it, and then you go back and say, “Okay, you asked us to do this. This is the amount of money that you need in order to do it.” And it's a long process, in the sense that it creates time to have the meetings and create the report. But it also, in some ways, can seem more accountable because it's backed by this Congress-directed council.

So the National Plan to End Parkinson's Act follows a very similar blueprint where it creates this council that has a variety of different people on it, from different federal agencies, from stakeholder groups, organizations that work with people living with Parkinson's disease, and caregivers and people living with the disease, and has them all come together to talk about the state of the disease and the state of what needs to happen in order to cure it, treat it, create a stronger therapy pipeline. And think about the ways in which the government can support this process to be better, faster, more effective and more responsive. So the National Plan to End Parkinson's sort of followed that same blueprint that the Alzheimer's Bill did. And I think it's it's really effective in that it creates, like I said, that level of accountability within Congress, because they're telling they passed it, they're telling this council to look at it and the next step, and when we were talking to advocates about this bill, we were very clear that this is the first step in many steps, that this is not the end of our advocacy for this legacy bill, because the next one will be to appropriate the funding.

Jessica and I have talked about this now, how can we start further building our advocacy program within CurePSP, so that when it comes time to appropriate funding, we have a community that feels ready and empowered to fight for that funding, and I think there's a long runway for it, but something that we want to be really intentional about.

And I also want to say too, it's the first time that those diseases have been mentioned in legislative policy on the federal level. And so it was remarkable in lots of different ways, for lots of different reasons. But one of them is that it specifically names PSP, CBD and MSA, and that is very rare unto itself. But also was a call for our community to really become invested in this piece of legislation, because it was specifically for the PSP, CBD and MSA community. So I do think that there's another layer of this that really is important to CurePSP and shouldn't be understated. I think that is a landmark unto itself, because there's been some small recognition bills for like, month of awareness bills or things like that, but nothing that had a substantial impact on specifically our diseases. So I think that's a really important thing that we need to highlight too, is that it really signifies a change in a shift to have the diseases recognized within legislation.

Oscar: Yeah, and not only were they named in the bill, but it feels like the momentum to actually get it passed through Congress didn't happen until Congresswoman Jennifer Wexton announced her PSP diagnosis, and the bill was actually changed to include her name. And once all that happened, I feel like it really started moving. And I think that's really interesting, that the name of the bill is someone living with PSP, so not only is it the name, but PSP was the driving force to get it passed through.

And for both of you, when it was passed through the Senate and signed by the President, what were you doing? Take me back to that moment.

Jessica: I just want to back up and say that it's amazing how often people in our community still say to me, “If only we had a famous person who had this disease, then maybe there'd be more public awareness, maybe there'd be more funding, more people would care, more people would get it.” And I think no one ever wishes that upon somebody. But it was just amazing that of all the people who could have been diagnosed with this, it was someone in Congress, and also someone who did not shy away from this diagnosis. She just took the bull by the horn with it and said, “I'm going to make sure this is a household name and I'm going to change what public awareness and legislation looks like for this disease that I'd never heard of before.” And again, I would never wish this on anybody and not on her, but we also couldn't have asked for someone who was a bigger advocate than she has been. We owe so much of that momentum to her and her partnership with CurePSP.

But in terms of what we were, how we felt, and what we were doing at that time, oh my gosh. It was just, it was amazing how quickly things happen. We had started to build a toolkit around this bill well over a year ago, before we had been introduced to Congresswoman Wexton, we joined the Michael J. Fox Foundation's Unified Parkinson's Advocacy Council, and they provided us a lot of guidance for how to build that toolkit and mobilize our community. And we were already doing that, but then things just really sped up with her, and a lot of the conversations she was having with her colleagues in Congress. And so her team invited us to Washington, DC in May, which happened to coincide with CurePSP’s Month of Awareness, and they wanted us to speak on Capitol Hill with her at a congressional briefing. And it was this very quick succession of things that week, we attended this symposium, an invite-only symposium about brain health and the environment, where there were people from Congress as well as other nonprofits, as well as some people with the diagnosis or lived experiences and healthcare professionals that the congresswoman herself attended, and then the very next day, we spoke at this congressional briefing. And then the next day, there was this social media push from her team for federal recognition of May as PSP Awareness Month, and then the day after that, the National Plan to End Parkinson's Act passed the Senate. And on that Friday, I was like, “What just happened?” It was just one of the most energizing weeks I think I've ever personally been through. But, hearing from our community and the excitement there of this platform that we now had was just extremely powerful and this amazing shock to our system of, oh my gosh, we obviously did not do all of those things alone. We did it in close partnership with her and Michael J. Fox Foundation and many, many other people, but our community played a part in all of that.

And I'll add one more thing too. I know that the congressional briefing that I spoke at was not heard by a lot of people except for those in the room. It was about 50 congressional staffers and I started out, and you're going to know where I'm going with this Oscar when I share it, but I started out by saying, “Raise your hand if you have or if you're somewhat familiar with Parkinson's disease,” and everybody in the room raised their hand. And then I said, “Raise your hand if you're somewhat familiar with ALS,” and everyone in the room raised their hand, and I said, “Okay, now raise your hand if you'd even heard of PSP before the congresswoman.” And no one in the room raised their hand, except for the CurePSP representatives, obviously, but that visual, and I knew it was going to look like that, but that visual, I think was really just eye opening for myself, but also everybody else in that room. And I hope that's something that people walked away with that day, that they could go back to their bosses and say, “Here's why this matters. Help us move this bill forward.”

Julie, do you have anything to add and also for you, Julie, this was personal to you too. What did that feel like for you to be a part of all of that and have this pass and the legacy for your mom through your work on that bill?

Julie: Yeah, I mean, on the one hand it's extremely personal, on the other hand, Congress is Congress, and they do what they want, when they want, how they want, and so to feel like there is a role to play in helping that move. For me, the biggest thing when my mom was diagnosed, we had absolutely no idea if she had been misdiagnosed at least three times before this, before we had received a probable diagnosis of CBD. And so it was such a trial for our family. And so to feel like I had taken the knowledge of what that experience was like and used it for something good is what really carries me to want to continue doing this kind of work, because it is such an awful experience, and it is so isolating and trying and hard, and there's so many things about it that you feel beaten down by different parts of this disease, and so to have something come out of it that was so strong and good and that would benefit other people. It was too late for my mom to have the benefit of that, but to be able to help other families like ours and other people experiencing these diagnoses is probably the most important thing for me, because I've seen the power of what legislation can do, and I've seen how communities have benefited from it.

On the flip side I've also seen how things can fall apart at the last minute, how bills don't live up to their expectations, and how it's a continual process that it's not like we crossed a finish line with the passage of this bill, that it's one step in a line, but to take that moment to be really proud of our community, for the role that they played in it. And also to be proud of CurePSP for figuring this out on the fly. I mean, this is a very small team that is a mighty team, but it's a small team. And it was sort of incredible to see the support that the organization was able to give to this piece of legislation while also embracing the UPAC, the Michael J Fox Foundation. To have those kinds of partnerships that were invaluable to the organization as well. I'm just so proud of what the organization was able to accomplish and how we did it as part of a broader community. No one does this stuff alone, and I just feel like it was a testament to the power of our community to be able to participate in it and play a leadership role in it. It was just incredible.

Oscar: I want to get into what comes next for the bill after it's been signed into law. But I still want to know more about how the advocacy efforts of CurePSP helped lead to this. Looking back at CurePSP’s advocacy efforts, is there anything that sticks out to you? Anything particularly effective, anything that worked well, or maybe anything that didn't go as planned? I know our community members sent a lot of messages to their local representatives. All the social media posts got great engagement. But yeah, anything that sticks out as working well or didn't.

Jessica: I'm learning that for every bill you want to support, you can support them at different levels, and for that particular bill we were pretty all in on it, because of all the reasons we mentioned the the leadership for Michael J Fox Foundation, our relationship with the congresswoman, the fact that it named, specifically named our diseases, which was really unprecedented. So from that we created different ways for people to engage in ways that’s most comfortable for them. So through the toolkit, people could directly, very easily, email their senators and their representatives, and we ended up having over 2200 emails sent from our community to Congress. And I know that messages alone, they get 1000s upon 1000s about different bills from all different people every day. And that alone is not enough. But I think it really matters to representatives, to see people from different organizations and communities and representing different diagnoses for something like this, in order to know how this bill, that kind of bill, impacts all different people. But we also, Julie, spoke to many of our support groups about that bill and different ways that people could get involved. And we had a number of individuals and a number of support groups say they want to do more and they wanted to actually speak with members of Congress. And so we set up, I forget how many at this point, probably about six or seven, very strategic meetings with congressional staffers and strategic meaning specific people that we wanted, that we needed to sign on as cosponsors or were on the committee where this Bill was sitting, in order to help move it forward. And we also, through that, we built relationships with different members of Congress and their staff.

Julie, I'm curious to hear from you about what worked and what didn't work. From that process, what could we learn from that going forward?

Julie: I think it's a few things. The bottom line is that most critical advances in health care, not just for legislation, but for people's specific diagnoses or not, is the importance of patient involvement in making change, and so whether it's patients or caregivers or people just who care about them, I think it takes an enormous level of momentum in order to make that kind of change. And you've seen it throughout history, in terms of the advances within different disease spaces, that there's a huge component to how people impacted by those diseases are mobilized. And I think this is a really great example, and I think the Alzheimer's bill is another really great example. When there's momentum from a patient population, not just a patient population, but from a community organizing perspective, it's almost unstoppable in a lot of ways. And it takes time, and it's something that can be really grueling, but the results can be life changing. For a lot of people it's an incremental process. So I do think that for me, going through this process with CurePSP, and watching the organization sort of shift and change through the different phases of an advocacy process is the importance of being a voice for people who are living with with these diseases and the people who care about them and their loved ones, but also learning out the best way to engage them. So like Jessica said, having different modalities that people who might not be able to speak can still be engaged, or being able to have accessibility as a factor in what actions you have is also really important.

The other thing is people who live in places that are geographically remote or are not near Centers of Care or who aren't plugged into a robust CurePSP community. How do we continue to support and reach those community members and give them a voice and an opportunity to engage, that might not be a traditional form of advocacy? What is the best way to do that? And I  think there's a lot of really wonderful work being done in patient advocacy spaces across diseases about this conversation, and I think it's one that CurePSP is aware of, and I think will continue to be aware of, and try and really think about in a strategic way, because their advocacy should matter as much as someone living in a in a place that's very connected within the the medical system. And so how do we represent that experience as well, and being really aware of how this disease may impact people differently? There's so many lessons to learn from our advocacy process. Some of it was like we're flying by the seat of our pants, we don't know what we're doing. And also, how can we be really intentional to ensure that we're representing people who don't usually have a seat at the table in these conversations and continue to champion those experiences in a way that I think will just continue to carry our momentum forward.

One of the other things I think worked really well was partnering with Michael J. Fox Foundation and other organizations that were working together. So it's really less about the ego of the process and more about how do we support people and empower them to be able to advocate as a united voice, rather than being really siloed. And I think that's not something that always happens in advocacy in general, not just in a healthcare space. So for me, that was also really wonderful to be able to see what that actually could look like and the power of that as well. There's so many things his could be its own podcast.

Jessica: To add to that, hearing you talk about giving a voice to people, something that worked really well is giving a framework or offering guidance to people on how to tell most effectively and impactfully tell their story for this kind of purpose, because when you ask somebody to tell me your your story, of their journey with PSP or CBD or MSA, I think it's really overwhelming for people. And Oscar, you know that you're a storyteller. You're leading our storytelling efforts here at CurePSP. It's how people understand the diagnosis that they're living with and everything they've been through, and how quickly things change and how things started before they got the diagnosis, and all of that, and distilling it down to almost a couple of sentences, whether you're making a quick phone call to your representative or adding a couple of lines to one of our emails or sitting in a virtual meeting with congressional staffers, you have to tell your story very quickly and in a very impactful way. So we learned a lot through that process of what people are looking for to guide them to do that. How do they pick the most important things for the purpose of being heard in that kind of space and moving that kind of bill forward. It's different than telling your story in a support group or to a healthcare professional, and it's really hard on our end as people who are facilitating these kind of meetings, it's really hard to say to someone, distill your story down in three minutes, because we want to make sure everyone has a chance to speak. And also, you don't feel like you're doing your story justice at times. And so how do you really support people through that? And I don't think there's like a one size fits all answer to it. I think it's just the balance of the kind of traditional way that these meetings are held, and also our community's understanding of the importance of what these meetings can represent. But also holding space for people as they prepare to be able to talk about it. And I think that's something that we've continued to try and do in the best way we can. But it's not easy and I think it can be sort of daunting at times. So I do think it's something that’s an evolving process for Jessica and I, and how can we build tools and mechanisms within the advocacy program to support that in a way that feels genuine and real to people, while also being able to really describe.

People say this about lots of different diseases, but it's like if you've met one person with CBD, you've met one person with CBD, if you've met one person with PSP, you've met one person with PSP, that everyone's story is unique and has its own cadence to it. And I think that's something that we've really tried to think about intentionally, of how to make that storytelling process impactful for both the staffer or the elected official listening to it as well as the person who's telling their story. And so I think that's something that we're continuing to always try and fine tune, too.

Oscar: I want to move on to looking ahead. But what you said is really important, it makes me think about how people often feel like they can't do much. This is an opportunity for people to feel like they can play an active role in making progress and making change, and it is so interesting how what we need from them is that we want to hear your story, but then we need it in this specific way to be effective to the masses and on this national stage. I don't know what I’m trying to say.

Julie: It’s a balance, Oscar, it's something that we struggle with, is that we want people to feel like they have the space, and not trying to just manufacture it into a box, and so it's neat and tidy. And that it will check off something for a congressional staffer. But that's real, and can be raw, but also, if we're in a meeting with 15 people, and everyone tells their full story, and it's like three hours later, the staffers are gone. So like, how do we try and support people through that difference. And I think there's been really great support. But I think there's been really good learning on our end on how to do that. But also, you know, for people hearing about these diseases for the first time, they have questions, and they have congressional staffers who want to know a little bit more specifics about it. We want to be able to give them time to ask those questions too. So it's sort of like this fine balance that our community has been really responsive to, and I think that's something that will continue to grow.

Oscar: Yeah, and now that the National Plan to End Parkinson's Act has been signed, what does the actual implementation look like? And what needs to be taken to ensure that there is a meaningful impact for people living with PSP, CBD and MSA.

Julie: So the implementation part of it is the formation of this Council, which, to my knowledge, hasn't occurred yet. So I don't know if it's something where the government is the government, and it doesn't always go as quickly or progress as quickly as maybe we'd like. So there's a lot happening in that space right now. President Biden signed it into law, I think on July 2, 2024, so the next step is for that council to be formed. And I think there's probably an application process that will accompany that announcement of the formation of the council that will advise and do the reporting process back to the Secretary of Health and Human Services, who will then present it to Congress. So it's our understanding that they have to do the report within, and I could be wrong about this, two to three years for them to meet and sort of go over and assess the different factors of coordination within the federal government around Parkinson’s disease, and also sort of the the impact on affordability, like there's lots of different ways in which this council is responsible for reporting back to Congress on next steps. And so that's where we're at right now, is this implementation phase where the actual Council is formed and then begins meeting. And so the legislation outlines who should sit on that council, and by who, I don't mean specific people, but roles that they. So I think it's like a representative from, you know, Medicare, or representative from patient organizations, a certain number, so they fill those roles, and then they begin the process of reporting, of assessing and then reporting back to Congress. So that's where we're at right now. And as Jessica alluded to, there's a lot of things happening simultaneously elections and that uncertainty. But this is within the federal government now, so it doesn't have to go through the process of anything electoral. It's already been passed and signed, and so now it's that we're at that implementation phase and for CurePSP, I think a lot of what we're doing is assessing what's happening.

So we're still really close with our partners in UPAC and the Michael J Fox Foundation to make sure we're updated on the status of what's happening and continuing to make sure that we're monitoring if applications are open or sort of what the status is, we're still in that phase. So that's the most important part, is for us to continue to be aware of what it's about. Regardless of whether or not we sit on this committee, we can still be really involved in its progress and be aware of ways in which CurePSP could support the work that's happening. But again, we're still in early days, so we don't really have an opportunity yet to weigh in on anything.

Oscar: I have several more future questions, but I don't want to keep you guys for too long, so I'm going to do a couple quick ones, and you can give quick answers, no pressure, but I want to know, are there any lessons you learned from going through all this that you think could be applied to future advocacy efforts? Going through this, how do you feel about future advocacy initiatives?

Jessica: Julie and I were just talking about this the other day. I think the big thing here is this past year we were building the plane while we were flying it. I think that's okay, because we've learned a lot and a lot of skill building through that and it worked. And, like I said, it happened really organically. But I think that now we get to kind of take a step back and be more intentional about what kind of community organization and community mobilization and building tool kits and identifying our strategic priorities around advocacy, building an agenda, identifying other bills that might not name our diseases. Now we get to be very proactive and intentional about what that's going to look like, while having this foundation underneath us of having a win and getting our community excited and building a lot of these relationships. And ultimately, I hope that people have seen through this process that we've been through over the last year-plus, is the connection between what they're going through every day, or what they've been through in the past, and what what happens on Capitol Hill, and that it is really you're in a long game with it, and that's really hard to be patient when you want to see change happen quickly, I think something that we'll just have to temper expectations around that, like what happened this past year happened a lot faster than anybody could have anticipated, and that was because of the congresswoman. It might not always go down like that going forward, Preparing people for the long game of it and what that has to look like will be a part of this process.

Oscar: Julie, having worked in advocacy for a while, are there any innovations or changes, if you had a magic wand or something, what would you like? What would you want to change about how advocacy is approached for our community for rare disease advocacy?

Julie: I think it would be sort of what Jessica was saying, like the translation of real life experiences to policy impacts. So for example, something like insurance or Medicare or disability or something like that. When someone experiences something in those systems that is infuriating and prevents access to care or resources, that there's a direct button that you push that, like a hologram comes up of your congressperson, and you can just be like, “Hey, this is not okay. This sucks. This is not okay. I don't like this.” And then have an automatic bill that's connected to this, and this is how I can change it, and this is why it should be changed, and this is the amount of people that it's affecting because it's one of the things that happen is that people experience things, and they think they're experiencing it in a bubble, that it's just them, or that it's something that they don't have the time, energy or resources to address, and so then they just live with it. When in reality, we live in a system that should be responsive. These elected officials literally work for you. And so I think there's more of a responsiveness. And I think that there are some members of Congress who do this really well. It's just not standardized. And so I think that if I could pick something, that it would be that there would be more of a constituent / advocate focus. And that's not to say that I think that there's elected officials that aren't like that, because I definitely think that there are. But if I had a magic wand, it would be like that instantaneous feedback of like, this is the bill that that is connected because there's a few things that our community really struggles with this experience, and we're trying to figure out what piece of legislation it refers back to. And it's sort of like this maze of us trying to decipher legislation that's decades old, to figure out do we need an amendment? Do we need this? Do we need a whole new piece of legislation? Is it something that's in policy? It gets complicated pretty quickly, and so that’s something that would take down that time, and that would enable us to be able to have sort of that instantaneous feedback to someone who's experiencing this in real time.

I think we're moving in that direction in a lot of ways, in advocacy, but I think that that level of responsiveness, that's the sort of thing that I think can really make the process more efficient. When there's easily accessible information and a way in which to get it that's not intimidating or that's accessible to people. I think that is a really general answer to your question, Oscar, but I think that's one of the things that as a person who works in this field, it takes time and energy to decipher this stuff. And I think we can lose advocates, because it feels like it takes too long to Jessica's point, so you know, what are the things that would help us move along?

Jessica: I have another one that I would add is breaking down some of these silos around the different neurodegenerative diseases. I think that it's really important to make sure that your diagnosis stands out for its unique considerations and needs, and at the same time, there's a power in numbers. And so that's something we've really tried to work on, like working with the Parkinson's bill, specifically, it's like, here's why we're a part of this bill, but also we're different than Parkinson's disease. And then now, as we're moving forward identifying other bills that we want to support in different ways, like the Healthy Brains Act that we were on Capitol Hill a couple months ago when it was introduced, that one is neurodegenerative disease agnostic. So that one's saying we want to better understand the correlation between environmental risk factors and the development of all neurodegenerative diseases. So through a bill like that and other ones that we're working to identify and also advocacy coalitions that we're joining now, we're bringing together the Parkinson's community with our community with ALS, with Alzheimer's disease, with multiple sclerosis, with Huntington's disease, and that way we can all say like we're overlapping needs and priorities.

Oscar: Yeah, I feel like the amount of collaboration you've had in the past year is so crucial, and yeah, so important. It's an extra thing beyond just writing to your representatives, or being like a disease where only someone directly affected knows about it, it's really a great way of, I feel like expanding the circles and getting people who have not heard about these diseases to hear about it and care. Are there any important dates or moments that are coming up that are important?

Julie: So there's a new Congress. There will be a new Congress elected in November that will be taking office in 2025, so it'll be a brand new Congress. So the legislative session on the federal level will begin again in January, so they'll start sitting then. And so I would encourage people to follow your elected officials on the state level, who represent you in your state houses, and then on the federal level, your members of Congress, your senators and the presidency, to follow them and figure out if you don't know already what their stances are on, specifically health care, and stay stay informed about kind of what they're doing and and for us, I think as as members of the CurePSP community, is to continue to look for updates from CurePSP about important pieces of legislation that we're following, and to be involved as much as possible. We, I think, are going to be doing some great things for advocacy in the coming year, and we would love it if people would stay engaged with us and continue to listen to our call for people to get involved and to be active with us.

Jessica: There's a lot of change coming up with the Congress but we're going to continue to build on what we've been doing. And we just want people to stay engaged in that process and be on the lookout. I think that was really well put in terms of important dates and what's coming up too along with the change in Congress, we recognize that Congresswoman Wexton will be retiring at the end of January, and so we look forward to continuing that relationship with her in different ways, while also building relationships with other members of Congress and recognizing her legacy with this bill and with our community, what she's done and what it's meant for us really cannot be overstated. So we will be looking to see what she does next with her new platform, after she has retired, and we head into this next session of Congress.

Julie: And I would just leave on the note of, regardless of whatever is happening in the future, that I think we have a tremendous role to play in advocacy as the CurePSP community, and I'm so excited to see where we're going next, and what our community prioritizes and is interested in us working on. There's so much opportunity for us, it's sort of scary and also awesome, at the same time that we have this great momentum and that we're really excited to be able to continue to shape it and provide opportunities for our community to tell their stories and to make an impact legislatively. So I want to thank everyone who's done that so far, like it's incredible what this community has accomplished in such a short amount of time, and I just can't wait to see what we do next.

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Oscar: Thank you to Jessica and Julie for sharing their insights, experiences and dedication to advancing advocacy for CurePSP. Their work continues to empower our community to tell their stories and continue this momentum. To learn how you can get involved, visit CurePSP’s advocacy page through the link in the description. If you enjoyed this episode, be sure to follow and rate us on Apple Podcasts, Spotify, Amazon Music or wherever else you get your podcasts. I'm your host, Oscar Sullivan, thanks for listening and talk to you again soon.