This month, Michael J. Fox and The Michael J. Fox Foundation Co-Founder and CEO Debi Brooks spoke with The New York Times award-winning columnist Tara Parker-Pope for HLTH, one of the world’s largest health care conferences. They discuss the power of patient engagement and how getting involved in research can accelerate better treatments and a cure.
When Tara asked how the Foundation has been able to galvanize the patient community’s voice, Michael reflects on starting the Foundation in 2000:
“I started to realize there was this concept of Parkinson’s being the grandmother and grandfather on the porch at the nursing home rocking and shaking. It just didn’t relate. When I was diagnosed, I saw it’s like when you’re pregnant and there’s a baby carriage everywhere. All I saw was people with Parkinson’s, and I started to realize that younger people had it too. They were marginalized. And I said we’re a vital population here.”
They talk about the critical role patients and families play in the Foundation’s landmark study, the Parkinson’s Progression Markers Initiative (PPMI). Michael explains:
“We have the answers in us. The answers would be extracted from our lives, and our experience, and our situation. So, when we make ourselves available to clinical trials — things we put in place with the Foundation — the more information we'll gather, and the more answers we'll get. And we'll be able to inform others with what they need to find their way to help us.”
Since 2010, more than 1,400 volunteers with and without Parkinson’s have contributed to PPMI, leading to findings that have changed the way the field thinks about Parkinson’s disease.
Today, PPMI is expanding and needs people with and without Parkinson’s. By growing the study to 4,000 participants at medical centers around the world, and enrolling as many as 100,000 people online, we aim to gain critical information that can help advance us closer to better treatments and prevention.
Debi, a control volunteer in PPMI herself, shares what it means to play a key role in speeding a cure:
“There is so much pride for the patients who've participated in this longitudinal study, because the output...They can see and they hear directly from drug makers how this new information is helping design trials, how it's helping identify the right patients to be recruiting into different treatment trials. It's just empowering.”
Inspired to take action? Watch the full conversation at the top of this page. Then, learn more about PPMI and join the study that could change everything.
