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"Patients Are at the Heart:" The Michael J. Fox Foundation's Patient Council

Since Michael J. Fox founded the Foundation, the patient voice has played a critical role in our programmatic agenda. We share patients’ sense of urgency for improved treatments and a cure, and patients’ unmet medical needs have shaped our decision-making around research priorities.

“Patients have always been at the heart of what we do, through our focus on their unmet needs and the personal connections to PD shared by many of our staff and board members,” says Michael J. Fox Foundation Co-Founder and Executive Vice Chairman Debi Brooks. “In our early years, we called on patients in ad hoc ways to provide the counsel that only those living with the disease could offer — such as authoring the Guide for the Newly Diagnosed on our website. In recent years, as our resources and programs have grown to encompass a greater emphasis on clinical research and community awareness building, we realized it was time to establish an advisory body of patients to provide regular counsel on overall strategic direction.” In 2009, the Foundation formally chartered its Patient Council.

Seizing an Important Opportunity

The Michael J. Fox Foundation for Parkinson's Research selected 10 council members from across the United States and Canada. Requirements for selection included not only having been diagnosed with Parkinson’s, but a range of experiences with the disease, as well as active engagement in the PD community — through the Foundation and/or other Parkinson’s organizations.

Patient Council members convene at bi-annual meetings with Foundation leadership, where they receive Foundation updates, hold brainstorming sessions and weigh in on Foundation initiatives. Members also share their guidance with the Foundation through monthly calls and informal interactions — helping to provide direction across numerous fronts, such as strategies to best convey patient priorities to the research community and content for patient education and outreach.

Among these early members was Carey Christensen of Stanwood, Washington. She shares, “It’s thrilling to be at table with MJFF staff and scientists who are at the leading edge of Parkinson’s research. It’s a privilege to take part in the conversation, and MJFF takes us seriously.”

Says CEO Todd Sherer, PhD, “The Patient Council has been a tremendous resource — to us, each other and the PD community. They’ve helped us communicate more effectively with patients and caregivers, and their insights into the challenges behind clinical trial participation in particular are invaluable.”

In 2012, MJFF expanded the Patient Council to 20 members to integrate new points of view and touch a wider geographic range. One of the new members is Fabrizio Acquaviva of Key Biscayne, Florida. Originally from Ecuador, Fabrizio was diagnosed 10 years ago at age 33. He exercises control over his condition “with my attitude and a lot of effort,” he says. Part of his therapy included learning how to fly remote-control helicopters, which demands a great deal of hand-eye coordination. Fabrizio brings to the Patient Council his belief that we need to find a better way to address the human side of the disease, as well as his business acumen from his experiences as an entrepreneur in South America. “Donating money is important, but there are many other ways to contribute. I’ve decided PD won’t control me, and I’m motivated to see how I can help.”

Unique Approaches Lead to a Single Desire to Help Other Patients

As Patient Council members, Carey and Fabrizio serve as ambassadors — for MJFF and the PD community. When asked what advice they would give to a newly diagnosed patient, they share a message of optimism that is also at the core of the Foundation’s mission. Fabrizio says, “Although you’re very scared when you first receive that diagnosis, know that there’s a better life for you out there. You become more aware of what you’ve been missing. Parkinson’s takes you into what I call reality. You learn to be more efficient every day so you can take advantage of what’s most important to you.”

Carey adds, “PD isn’t the end of the world. I wish I’d known how well I’d be doing 13 years later, and I expect to have many more fulfilling years. There are so many ways you can live with the disease now — you just have to find what works for you. Never lose your hope that it can get better, and that you can do something about it.”

Read more about the Patient Council and its members.

Published in the Spring 2012 issue of "Accelerating the Cure."

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