Spark of Change: Igniting Parkinson's Advocacy

by Kristi LaMonica PhD.

I live about a 20-minute drive north of New York's state capital Troy. This area has become quite the epicenter for Parkinson's advocacy, and I'm fully on board. Last year, Representative Paul Tonko (D-NY), was bipartisan co-sponsor of the National Plan to End Parkinson’s Act. I'm lucky to live right in the district of Representative Tonko. The only downside was that the plan didn't make it to the voting floor in 2022. But hey, the sponsors were true to their word –brought it back in 2023. And once again, Representative Tonko stood strong as a bipartisan co-sponsor.

Following the national plan closely through my PD Avengers connection and the Michael J. Fox Foundation (MJFF), I jumped at advocacy opportunities. My debut was at the end of March when I became part of a small group asked to meet with a staffer from Senator Kirsten Gillibrand's team (D-NY). I was given just three minutes to share my story. The goal was to sway Senator Gillibrand into co-sponsoring the national plan – and she did.

Fast forward a bit, earlier this month, MJFF contacted me again. I was invited to a "Faces of Parkinson’s" roundtable discussion with Senator Tonko and other local advocates. The day kicked off with me on a little parking adventure – street parking can be quite a puzzle. Flustered, I made it to Representative Tonko's office and was relieved to be greeted by familiar faces.

(Kristi LaMonica is third from left sitting next to Congressman Paul Tonko. Photo Credit: Samantha Simmons

Representative Tonko kicked things off by discussing how support for a National Plan to End Alzheimer’s has done wonders for research and drug pipelines. During this discussion, my dyskinesia acted up and I couldn’t sit still. Honestly, I took it as a good sign. When people with Parkinson’s advocate, we often look too put-together. I believe when we look too good, it works against our cause. It makes it more difficult for people to justify more funding for Parkinson’s. To that point, none of us in the room exactly fit the traditional image of someone with Parkinson's – you know, the stooped, white-haired, elderly man shuffling about.

We covered a lot of ground – from research to medications and nearly everything in between. Talking about the number of diagnoses created the perfect segue into discussing young onset Parkinson’s disease (YOPD), the unique challenges we face and for a request the YOPD community not be forgotten in the National Plan. The struggle to get disability support was brought up, and the research gap concerning women and hormones got its moment in the spotlight. I made sure to let Representative Tonko know that data from the PD Avengers and Fox Insight Experiences of Women with PD survey is open access via Fox Den. For researchers, it's like a treasure trove of preliminary data for grants. Overall, our meeting was a success. We didn't have to convince Representative Tonko to stand with us, but we did manage to introduce him to some new aspects.

Yesterday, another email from MJFF landed in my inbox. I'm in for a meeting with Senator Chuck Schumer's staffers (D-NY) on September 5th. It syncs perfectly with my teaching schedule, so of course, I'm saying yes!

MJFF public policy advocate and person living with young onset Parkinson’s Krisit LaMonica, PhD, of Troy, New York shared her Parkinson’s journey with New York lawmakers and the impact a PD Registry would have on research. Photo Credit: New York State Senate

In addition to advocating for the National Plan, I was invited to speak at a press event at the state capital to support a state registry for people with Parkinson’s. I was not feeling my best that day. I was off. And I wasn’t on by the time I had to leave. It was the first time I had to ask my husband to drive me anywhere. On the way to the event, I ditched my prepared speech and just spoke from the heart about the challenges Parkinson’s gave me that day. The bill unanimously passed the state senate but unfortunately the New York State Assembly did not take up the bill.

I implore each of you to reach out to state lawmakers in support of state registries across the country for Parkinson’s disease.

EDITOR’S NOTES: There is not a national registry for Parkinson’s in the United States. But there is a plan afoot. The goal is for each state to establish its own registry and feed the data into the Center for Disease Control's National Neuro-logical Conditions Surveillance System, which tracks the incidence and prevalence of many neurologic disorders, including Parkinson's.

If you would like to learn more about state government relations and how you can be involved in advancing work toward a cure for Parkinson’s, please register for the second annual State of the States webinar: 50 States, 50 Legislatures, and Thousands of Pieces of Legislation. Join the Michael J. Fox Foundation Policy Team on Wednesday, August 30 for a discussion on legislative wins, losses, and lessons learned along the way in state legislatures across the U.S. You can register for the webinar here. 

Kristi LaMonica’s Advocacy Journey: Insights for All

We can learn valuable lessons from Kristi LaMonica's adventures in advocacy.

Local Impact Matters: Living near Troy, New York's capital, taught Kristi the power of local advocacy. Change begins at home and radiates outward, creating tangible impact.

Resilience Brings Results: Despite delays, the National Plan to End Parkinson's Act's reintroduction in 2023 reflects the strength of persistence in advocacy.

Brevity Packs Punch: In her first speech to Senator Gillibrand's staffer, Kristi learned the might of concise, heartfelt messages to spur action.

Authenticity Over Perfection: Participating in a "Faces of Parkinson’s" discussion highlighted authenticity's power. Openness, not challenges, strengthens advocacy.

Inclusion is Vital: Advocating for the entire Parkinson's community, especially young onset patients, ensures equitable attention and boosts advocacy.

Stories Leave Impact: Sharing personal experiences, from accessing disability support to women's research gaps, enriches advocacy conversations.

Diverse Strategies Succeed: Engaging with officials in various contexts underscores the versatility of advocacy approaches.

Seize Opportunities: Amid personal challenges, speaking for a state registry showcased authenticity's resonance.

Collaboration Amplifies: Working with PD Avengers and Michael J. Fox Foundation emphasizes collective advocacy strength.

Incremental Steps Matter: State senate bill success proves small actions accumulate to significant change.

As Kristi LaMonica PhD. readies for Senator Schumer's staff discussion, her journey underscores every voice's importance and the impact of any contribution, no matter its size. Authenticity, seizing moments, and collaboration fuel her impactful advocacy.

Suggested Reading: Big wins and Next Steps in State Advocacy