An interview with Kristi LaMonica on Advocacy & YOPD on September 19, 2023 by George Ackerman, Ph.D, J.D.
I’m 44 and married with two rescued border collies and a rescued street cat. I have my PhD in cell and developmental biology from Wesleyan University. In grad school I worked on investigating cell migration in early development using stem cells, while the rest of the lab was trying to repair neurodegeneration in mouse seizure models using neural stem cells derived from embryonic stem cells. My husband and I moved to Denver in 2009 for my postdoc at UC Denver – Anschutz Medical Campus where I worked on craniofacial development. In 2014, we headed back east for my tenure track position in biology.
Since then, I have been tenured, had hip surgery, had toe surgery on both big toes to remove bone spurs, my father suddenly passed away, and I was diagnosed with young onset Parkinson’s disease (YOPD). I have had prodromal REM sleep disorder since 2005 and I can trace my early motor symptoms to 2014. I knew I had Parkinson’s well before my diagnosis, but still when someone officially diagnosed me, that’s when it became real. After diagnosis, it took a few months before I could tell my extended family I had Parkinson’s. After I started to tell a few people, I realized I couldn’t sit quietly on the sidelines when there was so much work to be done. I started by investigating gaps in the literature regarding women and YOPD. That was the start of my advocacy.
Can you tell me more about your advocacy?
I am involved in quite a few things!
First, there are several gaps in our knowledge regarding experiences of women with PD. I worked with the YOPD WPC group over the last few years to write a booklet for young women just diagnosed about what we wish we were told when diagnosed. It is available for download at www.yopdwomen.com
I’m part of the PD Avengers women with PD group and we’ve released two surveys, with more planned, through Fox Insight. We published a commentary in the Journal of Parkinson’s on data from the first survey. I also used this as an opportunity to change my research focus to women and YOPD. Allowing me to involve quite a few students. I also guest lecture for PT and OT programs. Last year, I coordinated our institution’s first LSVT – Big training for PT and OT graduate students. I also am a site mentor for some graduate student research focusing on Parkinson’s. I am also co-chair of the PD Avengers Wellness Committee. We had a working group with PMD Alliance that worked on a global support group guide.
Living in the capital area of NY, I have also had the opportunity to advocate for the National Plan to End Parkinson’s with the Michael J Fox foundation (MJFF). In March, I participated in a zoom with a staff member of Senator Gillibrand, in August with Paul Tonko, and in early September with Senator Schumer’s staff members. I also got to speak at a press release at the state capital about support for state Parkinson’s registries. It was the first time I had to have my husband drive me anywhere. I threw out my prepared remarks and instead spoke about how emotional my day was.
I’m also an ambassador for the Davis Phinney Foundation and am involved in our local PD community. Both have the goal of helping people live better with Parkinson’s.
I also use my position as an educator to help train the next generations of occupational and physical therapists. Students that work on research learn quite a bit about women and YOPD. I’m also the site mentor for an amazing doctoral student, Emily Peters.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
Having a diagnosis of YOPD and being a woman, plus being a biology professor, I had to advocate. It’s difficult to hear women in online Facebook groups ask questions about their menstrual cycle and their Parkinson’s symptoms being worse and their health care teams telling them that hormones don’t impact their Parkinson’s. I have to work towards making a difference!
What type of goals do individuals with Parkinson’s awareness have when working with you?
I hope my advocacy work inspires and educates students, our future health care providers, to have a better understanding and more empathy about Parkinson’s.
What effect can your advocacy have on an individual with Parkinson’s awareness?
I hope that my advocacy through teaching leads to new faces in the field having more empathy and understanding for people with Parkinson’s along with a sense of urgency involving medication timing and global access.
I hope that my other advocacy leads to a greater awareness of Parkinson’s in the global community. I hope it helps promote more research regarding women and greater inclusion of women in clinical trials. I hope that it leads to global work solving the issue of medication equity and ending stigma.
If you haven’t seen this already, please take less than 15 minutes to watch this very moving short film that my friend Natasha Fothergill-Misbah worked on producing. We still have more work to do.
What would you like to see as a future goal for your advocacy?
I would like to see more research focused on women and women involved in more clinical trials. I’m also grateful to be involved in helping with Dr. Fothergill-Misbah’s project Transforming Parkinson’s Care in Africa to help spread awareness about Parkinson’s ending stigma. Just a little goal.
What events do you participate in?
I try to participate in any events I can regarding women and PD. I also try to support efforts for medication equity, increasing Parkinson’s awareness, and working to end stigma.
I have been very lucky that my schedule has aligned, and I have been able to participate in advocacy events for MJFF for the National Plan to End Parkinson’s.
How can someone get in touch? What is your website?
I can be reached by email at email@example.com to through a search of DPF ambassadors.
How can others also become advocates for awareness?
Just talk to anyone and everyone about Parkinson’s. That’s a great way to start advocating.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
I think after the World Parkinson’s Congress in Barcelona that everyone was just tired from advocating so much, but we can’t lose the momentum. We still have work to do!