In celebration of Pride Month — a time to recognize the valuable contributions of the worldwide LGBTQ+ community and commemorate the Stonewall Inn uprising of June 1969 in our hometown of New York City — The Michael J. Fox Foundation (MJFF) is once again celebrating this month by featuring the stories of Parkinson’s disease (PD) community members who identify as part of the LGBTQ+ community.

Calling his Parkinson’s diagnosis a “second coming out,” John Lipp, 55, a Parkinson’s advocate, writer and nonprofit executive based in the San Francisco Bay Area, has shared how the support from his husband Peter has pushed him to take on challenges and have the courage to keep fighting. John shares his experience in a Foundation guest blog:

“Sometimes at Parkinson's events, I am introduced as a ‘patient’ and Peter is introduced as my ‘caregiver.’ I'd like to eradicate that language once and for all. Words matter in how we describe and see ourselves, and they evolve and adapt with us over time. I don't see myself as a ‘patient,’ but as a person living with Parkinson's; active, independent and equal. I don't see Peter as my ‘caregiver,’ but as my husband; active, independent and equal.”

Lance Wilson, MSS, is a neuroscience medical social worker at the Jefferson Comprehensive Parkinson’s Disease and Movement Disorder Center in the Vickie and Jack Farber Institute of Neuroscience at Thomas Jefferson University in Philadelphia, Pennsylvania. A recent MJFF webinar panelist on building connections, Lance discussed resources available for people and families navigating the Parkinson’s journey, including the LGBTQ+ community who he works closely with. Lance shared:

“This past year has highlighted disparities for many communities — it’s made me more vocal in my approach to care and research. I was already initiating conversations about healthcare disparities and intersectional identities that we as individuals possess, but felt that sometimes I needed to mute myself. This is no longer the case because I truly believe everyone deserves adequate care and that means there is no ‘cookie-cutter’ approach to do things — care must be adapted to the patient. I advocate and champion for the populations that are not always able to amplify their voice in whatever way I can because we all deserve to live our best and most authentic life.”

In search of running for a cause, Team Fox supporter Jamie Reed of Swampscott, Massachusetts, has found herself crossing many finish lines since 2013. With no prior personal connection to PD, Jamie credits the passion and heart from Team Fox members Chris Tracey and Joyce Chu (who she met at marathon events) as her inspiration to lace up for a cure. Jamie has signed up to run the 2021 TCS NYC Marathon with her wife, Jessica, and she shares why the Team Fox bib is special to her:  

“Anytime I join an event, I often think about how welcoming they’ll be or if they’ll assume I have a boyfriend or husband. Much of my 20s was not only finding Team Fox and this incredible community, but it was also my coming out journey. It amazed me that when I joined Team Fox and whenever I mentioned a girlfriend no one would blink an eye, but instead embrace me. This disease does not discriminate and that’s why representation matters. Team Fox is a community of people coming together and welcoming all — and it’s meant so much to me.”

Donny Moss of Manhattan, New York, is a care partner and husband to MJFF’s Chief People Officer, Jim McNasby, JD, who has been living with Parkinson’s since 31. Together, Donny and Jim have taken on the Parkinson’s journey with optimism. Featured in MJFF’s latest guide on deep brain stimulation (DBS) and Parkinson’s, Donny shares how they’ve navigated life before and after Jim’s DBS surgery:

“I never thought of myself as a caregiver, but it’s what I became, and I accepted it organically. There was this turning point when Jim had his DBS surgery and everything changed. When Jim got this new lease on life because of the DBS surgery, it turned back the clock to a time when Jim was far less symptomatic and had a better quality of life. It gave us a sense of gratitude to get back to the things we love like taking walks together and be able to help others through our work.”

MJFF community member, professional development specialist and creator of the blog “Parking Suns: A Life with Parkinson’s Disease” Bruce Ballard, 69, of New York City has been living with PD since 2012 and has written about his journey navigating the disease, including the stigma and challenges of equitable care around the world as a member of the LGBTQ+ community. Bruce shares:

“I remember when I shared my first blog post about what’s it like being part of the LGBTQ+ community and living with Parkinson’s. I didn’t know what to expect, but I knew there wasn’t enough dialogue about issues on care that many of my fellow LGBTQ+ Parkies could relate to or at least start a conversation on. Parkinson’s can feel isolating already as it is. My advice to others is to find ways to stay connected, whether it's joining the Foundation’s Buddy Network online platform or finding a local support group or exercise class.”

Join MJFF’s Parkinson’s Buddy Network platform, where people and loved ones with PD can engage in important dialogue, join groups like our LGBTQ+ Parkinson’s community, find useful resources and build long-lasting relationships.

Stephanie Paddock, 39, MJFF vice president of community outreach and events, and whose father lived with PD, has crossed many athletic feats with Team Fox and knows firsthand the value of educational events and resources for people and families impacted by Parkinson's disease. Stephanie shares what pride month means to her and the power of inclusive resources:

“Parkinson’s impacts everyone. As a loved one touched by this disease and as a member of the LGBTQ+ community, I know the word 'stigma' can often come to mind for both communities. For me, celebrating pride month is about saying, ‘This is who I am.’ Being a member of MJFF’s staff for now over 12 years, I’m grateful to my colleagues who’ve made a safe space for dialogue both internally and externally. I see firsthand how important it is to have educational resources and events where everyone feels safe and comfortable sharing their journey with this disease. Together, we’re making strides.”

Learn more about upcoming community events like our free educational series, Parkinson’s IQ + You, for people and families navigating the Parkinson’s journey.

Editor’s Note: The Foundation is always seeking to grow its diverse community of people touched by Parkinson’s disease. If interested, please email your story to shareyourstory@michaeljfox.org along with the best contact information to reach you. We may share your story in future communications.

To date, most PD research has not been fully representative of all people who live with the disease. As a result, our understanding of how PD affects people living with the disease and their families across diverse backgrounds, of different races, ages, ethnicities, gender and sexual orientation is incomplete. MJFF is funding multiple initiatives with doctors, scientists and patients to make research more inclusive. This year MJFF is funding a team at the University of Nevada working with the LGBTQ+ community to learn about the health needs of individuals with PD. The study is actively recruiting participants to fill out a survey to help improve the health and care of LGBTQ+ people with PD.