The Michael J. Fox Foundation for Parkinson’s Research (MJFF) and ACADIA Pharmaceuticals announce the launch of “Parkinson’s IQ + You,” a series of local events across the United States in 2019 and 2020 to educate and empower patients and their care partners.
“Between its symptoms and progression, Parkinson’s can present unique challenges for those of us who live with the disease, but also for our loved ones who support us,” says John L. Lipp, writer, nonprofit Executive Director and person with Parkinson’s, in a media release.
“I often say, ‘I can’t control my Parkinson’s, but I can control how I respond to it.’ Parkinson’s IQ + You will offer people in the community, including me and my husband, an opportunity to learn from other patients and families and from experts in the field, so that we can turn education today into action tomorrow.”
Parkinson’s IQ + You will host live events to support Parkinson’s families in learning more about the disease, the elements of a comprehensive care team, communication between patients and their doctors, the latest PD treatments and those in development, and the value of participating in clinical studies.
The national event series is committed to amplifying a wide range of panel participants, including patients and their care partners, to reflect diverse representation from within the Parkinson’s community as well as the variability of the disease itself. In addition to the interactive programming, each event will host a Parkinson’s Partner Expo of tailored resources to draw connections within the local community.
“Patients are the force driving our research priorities and our urgent mission to end Parkinson’s,” states Todd Sherer, PhD, MJFF’s chief executive officer, the release continues.
“The Foundation is committed to ensuring all people with Parkinson’s, and their families, are empowered to make decisions about treatment and care. And we want to work side-by-side in partnership with patients to advance Parkinson’s research.”
Community Events Coming to a City near You
Parkinson’s IQ + You will visit multiple cities across the United States in 2019 and 2020, bringing full-day events and a Parkinson’s Partner Expo connecting participants with local community resources. The event is designed to support Parkinson’s patients at every stage of disease and their care partners. The event includes complimentary breakfast and lunch, and registration is free. The 2019 events will be hosted by Larry Gifford, a person with Parkinson’s and podcast host of “When Life Gives You Parkinson’s.”
Confirmed events are as follows:
- Atlanta, Georgia: Saturday, September 14
- Southern California: Saturday, December 14
- Phoenix, Arizona: Saturday, January 11
Events will include interactive panels and sessions on understanding Parkinson’s, living well with the disease, the latest updates on research advances and how to get involved in clinical research. During “If I Knew Then What I Know Now,” a patient and care partner will share their personal strategies and anecdotes on living well with PD from diagnosis onward. To illustrate the breadth of medical professionals who treat all aspect of Parkinson’s, “Building Your Care Team” will equip the audience with actions they can take to build the right team of experts to care for body and mind. Each event will also feature “Seeing a Movement Disorder Specialist,” a live demonstration of a typical appointment with a clinician to share insights on the benefits of seeing a specialist, what to expect and how to make the most of a doctor’s appointment.
Staffed throughout the day, the Parkinson’s Partner Expo will gather local resources including healthcare providers from movement disorder centers, physical and speech therapists, clinical trial teams and representatives from support and advocacy groups. The Expo will also unite national Parkinson’s organizations to serve patients and families with in-person opportunities to learn the latest information on the disease, tools to optimize care and ways to engage with the community. Parkinson’s IQ + You will benefit from the contributions of the American Parkinson Disease Association, Caregiver Action Network, CurePSP, Inc., Davis Phinney Foundation for Parkinson’s, The Parkinson Alliance, Parkinson’s Foundation and Parkinson’s Unity Walk, who will all be present during the Expo, the release explains.
“We are honored to collaborate with The Michael J. Fox Foundation on this important project to advance education and better care for people with Parkinson’s disease and their caregivers,” comments Rob Kaper, MD, senior vice president, global head of medical affairs at ACADIA Pharmaceuticals.
“The Parkinson’s IQ + You program has been uniquely designed to bring much needed support and information to the Parkinson’s community. We look forward to this national series of events across the country, which will offer attendees the opportunity to interact with healthcare experts and other people with Parkinson’s and their families and ask important questions about disease management.”
[Source(s):The Michael J. Fox Foundation for Parkinson’s Research, ACADIA Pharmaceuticals, PR Newswire]