Whether you’re living with Parkinson’s or love someone who is, our community is united by a shared goal: ending Parkinson’s disease. There are many ways you can join The Michael J. Fox Foundation (MJFF) to help make our mission a reality — from participating in research studies and fundraising with Team Fox, to advocating for public policy that opens new doors to more research and better care. 

Today, we’re spotlighting five members of our community who have raised their hands by joining our advocacy in Washington, D.C. and in state capitals across the country. Read on to find out what motivates them to speak up, the progress they’ve helped achieve and the wins they’re most proud of.

Michael S. Fitts: Using his Voice to Champion Others

After being diagnosed with early-onset Parkinson’s disease (EOPD) diagnosis at age 38, Michael S. Fitts began looking for ways to help accelerate a cure. He joined a support group and attended events in his local Parkinson’s community. He was encouraged to participate in volunteer research opportunities, but “I never seemed to meet the criteria,” Michael says. “I was either too young or too far along in my disease progression, or I had already begun taking meds.”

But Michael wasn’t deterred. Although he describes himself as an introvert, he found that he could make an impact by using his voice to champion others living with Parkinson’s. “When I advocate,” Michael says, “it not only helps other people living with Parkinson’s, but it also takes any spotlight off me and allows me to avoid feeling sorry for myself.”

A longtime leader throughout his career, Michael made history as the first African American faculty member, assistant director and later assistant dean at the Lister Hill Library of the Health Sciences at the University of Alabama at Birmingham. Michael also advises MJFF as a member of our Patient Council and remains clear-eyed about his mission to help people live well with Parkinson’s no matter where they are in their journey. As he puts it, “There is still work to do, so I’ll never quit.”

“There is still work to do, so I’ll never quit.” 

Kevin Kwok, PharmD: Working to Make Parkinson’s Yesterday’s News

Following his own EOPD diagnosis in 2009 at age 48, Kevin Kwok, PharmD, became passionate about making sure the patient voice is front and center in Parkinson’s research and policy. With decades of experience in the life sciences industry, Kevin volunteers his time and expertise to help shape a future without Parkinson’s. “As a biopharma executive, I've witnessed the eradication or modification of other diseases,” he says. “With solid health policy and sound science, I know we'll look back at Parkinson’s with the same historic fondness.”

“With solid health policy and sound science, I know we'll look back at Parkinson’s with the same historic fondness.”

A self-described “wannabe athlete,” Kevin finds purpose in action. He is a member of MJFF’s Patient Council, has testified before the U.S. Food and Drug Administration, volunteers for the Parkinson’s Progression Marker's Initiative (PPMI), serves on the board of directors for an MJFF partner organization, Davis Phinney Foundation... and the list goes on!

Kevin’s message to others living with Parkinson’s? Get involved, stay hopeful and never underestimate the power of your story. “I'm most proud when a new generation of people with Parkinson’s tell me my advocacy has catalyzed their desire to become involved,” he shares. “Our advocacy will only end when Parkinson’s is yesterday’s news.”

Alice Mullamphy: A Care Partner on a Mission

When her husband Kenneth was diagnosed with Progressive Supranuclear Palsy (PSP) — a rare neurodegenerative disease — Alice Mullamphy became a care partner to Kenneth and a fierce advocate for people living with PSP. A veteran of the United States Marine Corps, Kenneth served at Camp Lejeune where many military servicemembers were exposed to trichloroethylene (TCE), a toxic chemical known to increase Parkinson’s risk.

Alice has made it her mission to ensure that Kenneth and other military veterans living with PSP receive the care they deserve. She has urged the U.S. Department of Veterans Affairs to add PSP and other atypical parkinsonisms to the list of “presumptive conditions” linked to exposures and stressors sustained during military service so that these veterans can receive disability benefits. 

Many brain diseases — like Parkinson’s and PSP — share underlying pathologies and can be caused by the same dysfunction in brain and body cells. That’s why MJFF works with advocates like Alice, and partner organizations like CurePSP, to help elected leaders understand these connections.

In addition to her advocacy with MJFF, Alice recently joined CurePSP’s new Advocacy Steering Committee to help guide the organization’s legislative agenda and encourage others to get involved. “Together, through awareness and education,” she says, “we can deepen understanding of PSP and move closer to a cure.” 

“Together, through awareness and education, we can deepen understanding of PSP and move closer to a cure.” 

Jennifer Newman: Doing it for her Daughters

When Jenny Newman was diagnosed with EOPD at 52, she was determined to show her twin daughters “that the way to face life’s hardships is to fight back.” One way to do that, Jenny says, is to “find your strengths and use them with urgency and purpose.” Since her diagnosis, Jenny has done just that.

“Find your strengths and use them with urgency and purpose.” 

As vice president of a publishing company, Jenny uses her professional skills to write articles for The Young Onset Parkinson’s Network where she offers readers an honest, heartfelt look at her journey. In addition to her writing, Jenny has also teamed up with us to advocate on Capitol Hill.

As a Marylander living in close proximity to Washington, D.C., Jenny is no stranger to government advocacy, but even she was surprised to find how simple yet powerful it felt to share her story with her members of Congress. Together with tens of thousands of Parkinson’s community members across the country, Jenny’s advocacy helped secure the unanimous passage of the National Plan to End Parkinson’s Act, which was signed into law on July 2, 2024.

As for her daughters, Jenny says: “I know they’re proud of me. That means everything. It keeps me going.” 

Ron Sable: In Service to Ending Parkinson’s

From his storied career in Washington, D.C. to his Parkinson’s advocacy, Ron Sable has served others throughout his life. A retired Air Force colonel and former Special Assistant for National Security Affairs under President Reagan (among many of his prestigious roles), Ron was diagnosed with Parkinson’s in 2015. Like Kenneth Mullamphy, he believes his Parkinson’s is related to exposure to a harmful chemical, Agent Orange, during his military service.

Ron has continued his professional work as president of a consulting practice supporting commercial, government and nonprofit entities, and as chair of the Board of Paragon Space Development Corporation and the University of Arizona’s Center for Leadership Ethics. And after undergoing successful deep brain stimulation surgery in 2020, Ron’s tremor improved significantly, encouraging him to pursue Parkinson’s advocacy as well.

Ron now uses his government affairs expertise and know-how to advocate for key legislation like the National Plan to End Parkinson’s Act and to support others navigating the unique challenges that come with a Parkinson’s diagnosis.

“I became an advocate because there is strength in numbers,” he says, “a belief reconfirmed every time I speak to others involved in supporting legislation and funding for research. Advocacy is a role I take seriously, as is mentoring others with Parkinson’s, especially those recently diagnosed.”  

“I became an advocate because there is strength in numbers, a belief reconfirmed every time I speak to others involved in supporting legislation and funding for research. 

Public policy and advocacy are critical pieces to solving the Parkinson’s puzzle, and grassroots advocacy is how we get it done. Sign up for our policy network to join advocates like Michael, Kevin, Alice, Jenny and Ron in making a difference.