Within weeks of being diagnosed with Parkinson's disease (PD) at 39, Matt Keswick sought to learn more about the disease and forge relationships within the Parkinson's community. He started by connecting with doctors, others living with young-onset PD and The Michael J. Fox Foundation (MJFF) Co-Founder Debi Brooks.
Yet he preferred to keep his efforts behind the scenes and didn't reveal his diagnosis to many. As someone with a high-profile job, the Boston-based owner of a government relations firm was concerned that he could lose clients or give his competitors an edge.
Four years later, as his symptoms and side effects were becoming more prominent, Matt decided to go public on his own terms. He accepted an invitation to join MJFF's Public Policy Council. In February, he was one of more than 200 volunteers who journeyed to Washington, D.C. to advocate on Parkinson's policy issues, a role that turned the tables on his usual job.
Then, he wrote a heartfelt piece on LinkedIn detailing his life with Parkinson's, emphasizing many positive changes and touching briefly on his day-to-day challenges. "The piece was kind of a coming out for me," he says. "It was the first time I had publically acknowledged [my PD diagnosis]. I wanted to define it myself before someone defined me."
The results were astounding. Family, co-workers, clients and even other lobbying firms instantly reached out to offer encouragement and donations.
Matt and his wife Christy harnessed the goodwill into a Team Fox fundraiser. As a lobbyist, Matt was more familiar with cocktail parties than golf outings or bike races, so they planned a sit-down, three-course meal at one of Boston's finest restaurants, Davio's.
Their goal of $25,000 was quickly surpassed, and they ultimately raised $100,000 thanks to generous friends who responded to the couple's emphasis on the evening as a celebration of community and their hope for advancing research.
To cap off the evening, Matt was able to get Boston's famed Zakim Bridge lit up orange in honor of MJFF, which prompted local media coverage spotlighting the Foundation.
The dinner not only raised an extraordinary amount of money, it resulted in a renewed sense of optimism for Matt and Christy. "People's attitudes have changed," Matt says.
A key influencer in Matt's optimism has been Michael himself. "Seeing him, watching his involvement, his optimism is just contagious and exciting. I want to express that."
Since Matt has opened up about his Parkinson's diagnosis, he's seen his business grow, and he has gained a deeper appreciation for life and relationships.
"The human spirit is pretty strong if you can harness it in the right way," he says. "I've done a lot of political fundraising, but this is one campaign I didn't sign up for...you have to take a negative and turn it positive."
Interested in encouraging your friends to support your dedication to speeding a cure? Join Team Fox today.
Learn more about MJFF's public policy work and how you can help advocate with the PD community.
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Laura Amann is an award-winning freelance writer who contributes personal stories about living with Parkinson's to the MJFF blog