- With an estimated 1 million people in the United States currently living with Parkinson's, and approximately 60,000 newly diagnosed annually, resources to educate patients and families are critical
- Authored by members of the Foundation’s Patient Council, the new guide provides first-hand reflections and practical strategies to answer common questions on understanding and living with Parkinson’s
- Anyone touched by Parkinson’s is encouraged to download the free guide at michaeljfox.org/newlydiagnosed
NEW YORK (May 19, 2020) – As part of its commitment to educate the Parkinson’s disease (PD) community and to build onramps for engagement, The Michael J. Fox Foundation for Parkinson’s Research (MJFF) today launches an educational resource, “If I Knew Then What I Know Now: The Michael J. Fox Foundation Patient Council’s Guide for People Newly Diagnosed with Parkinson’s.” Authored by people living with Parkinson’s, the new guide — available at michaeljfox.org/newlydiagnosed — provides patients and families with insights, wisdom and practical strategies to answer common questions about navigating life with PD.
New Guide Written for Patients, by Patients
“If I Knew Then What I Know Now” was created by experts on Parkinson’s — those living with the disease. The patient-authored guide includes reflections from five members of MJFF’s Patient Council, an advisory group established in 2009 as a formal channel for input from the PD community. In addition to contributing writers from the Patient Council, guide topics were sourced by audience questions from the Foundation’s “Parkinson’s IQ + You” national event series and the content received review from the entire Patient Council and a diverse sampling of community members living with PD.
“A Parkinson’s diagnosis brings many questions and concerns and a series of inevitable hurdles. We may not have a choice in our diagnosis, but how we face those challenges is ours to determine,” said Soania Mathur, MD, guide contributing writer and co-chair of MJFF’s Patient Council. “My advice to those newly diagnosed is to become an active participant in your disease management — educate yourself, adopt healthy lifestyle choices and optimize your quality of life. And a good place to start is with this guide.”
Woven throughout the patient reflections, the resource also offers tips on managing Parkinson’s care written by MJFF Vice President of Medical Communications and movement disorder specialist Rachel Dolhun, MD. In this informative 32-page guide, patients and families can explore:
- Comforting and knowledgeable first-hand insights on PD;
- Perspectives on common questions around diagnosis and what to expect with the disease;
- Practical tips and strategies to navigate life with Parkinson’s; and
- Information on a variety of resources to learn more about life with PD.
The free guide is available to download at michaeljfox.org/newlydiagnosed. A webinar on this topic, featuring Parkinson’s community members and experts, also will be available on Thursday, May 21. Register for the free webinar here.
“Many people can recall the exact moment they heard the words ‘you have Parkinson’s,’” said Rachel Dolhun, MD. “The Michael J. Fox Foundation has helped countless people process their diagnosis to move through their earliest days with the disease. This guide is about empowering those in the community — whether you’ve lived with Parkinson’s for days or decades — to connect with others who are on a similar journey and who have found answers to the questions you might be asking for the first time.”
Empowering the Newly Diagnosed is Critical to Parkinson’s Research
Since its inception in 2000, MJFF has remained laser-focused on speeding better treatments and a cure for the estimated 6 million people worldwide with Parkinson’s disease. Yet, accelerating research progress requires the engagement and participation of those living with the disease. The Foundation works urgently to help citizen scientists find, understand and embrace opportunities to partner with researchers in the pursuit of a cure.
By the time of a Parkinson’s diagnosis, as many as 80 percent of dopamine-producing cells in the brain may have been damaged by underlying disease processes. Research that tracks the progression of PD is best carried out in patients so recently diagnosed that they are not yet taking medicine to alleviate symptoms. Newly diagnosed Parkinson’s patients — approximately 60,000 individuals in the United States each year — hold a unique value in accelerating critical research forward.
MJFF is committed to creating educational resources and onramps for the Parkinson’s community to help patients and families better understand their role in catalyzing research. Earlier this year, the Foundation relaunched its online clinical study matching tool, Fox Trial Finder (www.foxtrialfinder.org), which connects volunteers with hundreds of actively recruiting studies around the world. And MJFF is the sponsor of Fox Insight, an online clinical study that collects information from those living with and without Parkinson’s on the lived experience and genetics of the disease, and the Parkinson's Progression Markers Initiative, a landmark clinical study including nearly 1,400 participants — focused on identifying and validating Parkinson's disease biomarkers.
About The Michael J. Fox Foundation for Parkinson’s Research
As the world's largest nonprofit funder of Parkinson's research, The Michael J. Fox Foundation is dedicated to accelerating a cure for Parkinson's disease and improved therapies for those living with the condition today. The Foundation pursues its goals through an aggressively funded, highly targeted research program coupled with active global engagement of scientists, Parkinson's patients, business leaders, clinical trial participants, donors and volunteers. In addition to funding more than $900 million in research to date, the Foundation has fundamentally altered the trajectory of progress toward a cure. Operating at the hub of worldwide Parkinson's research, the Foundation forges groundbreaking collaborations with industry leaders, academic scientists and government research funders; increases the flow of participants into Parkinson's disease clinical trials with its online tool, Fox Trial Finder; promotes Parkinson's awareness through high-profile advocacy, events and outreach; and coordinates the grassroots involvement of thousands of Team Fox members around the world.
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The Michael J. Fox Foundation