Parkinson's Disease Foundation Invests in Next Generation of Patient Leaders

Tenth Training Welcomes New PDF Research Advocates to the Team Ending Parkinson's

NEW YORK, July 15, 2016 

The Parkinson's Disease Foundation® (PDF®) is pleased to welcome 20 people with Parkinson's disease and care partners to its national research advocacy network.  These individuals join more than 325 patient leaders who are helping PDF solve, treat and end Parkinson's disease.

The number of people living with Parkinson's is expected to double by 2030.  PDF research investments have advanced our understanding of Parkinson's and improved millions of lives worldwide.  But the Parkinson's community lacks the therapies they need most — those that would ease disabling symptoms, and slow or stop the disease.  PDF is accelerating these goals by leveraging the strengths of the people with the most at stake — those living with the disease.

"More than a decade ago, PDF recognized that a critical piece of the research equation was missing: the patient," said Veronica Todaro, M.P.H., Vice President, National Programs, PDF.  "We had a vision for the future in which people with Parkinson's would be at the forefront of research and today, PDF Research Advocates are making that vision a reality."

This week, the newest PDF Research Advocates are participating in the tenth training for Parkinson's Advocates in Research, a signature program of PDF.  Those trained through the program have made strides in advancing patient-centered research and care by advising government on research priorities, collaborating with industry to create models of patient engagement and partnering with academic centers to reach underserved communities.

"As a person living with Parkinson's, I understand the urgency for better treatments and a cure," said Kirk Hall, M.B.A., of Highlands Ranch, CO, a PDF Research Advocate and faculty member for the training.  "Having worked on the frontlines with researchers, I want my new colleagues to know this: together, we can create a new model of patient-driven research and care."

This week's training is part of PDF's strategy to end Parkinson's disease by building a team of leaders in science, health care and the patient community, and mobilizing them to work together toward a cure.  To learn more about the program and how to partner with PDF Research Advocates, contact PDF at (800) 457-6676 or info@pdf.org or visit www.pdf.org/pair.

About Parkinson's Disease
Parkinson's disease is a progressive neurological disorder that affects nearly one million people in the US.  Although promising research is being conducted, there is currently no cure for Parkinson's disease.

About Patient Leadership at PDF 
As part of the Parkinson's Disease Foundation® (PDF®) strategy to end Parkinson's, PDF mobilizes leaders in the patient community to help us more quickly solve, treat and end the disease.  To date, through its innovative patient leadership programs, PDF has trained more than 325 people with Parkinson's and care partners.  Together, PDF and its patient leaders are playing an integral role in shaping patient-centered research and care by advising government on research priorities, collaborating with industry to create models of patient engagement and partnering with academic centers to develop groundbreaking programs that reach underserved communities.  This work began more than a decade ago with PDtrials, established in 2004 as the first website and coalition to help patients understand and find clinical trials; continued with the creation of the PDF People with Parkinson's Advisory Council in 2006, the first council of its kind in the community; expanded with the growth of the Parkinson's Advocates in Research program since 2008, which trains leaders to serve on the frontlines with professionals seeking better treatments for their disease; and is reaching new communities with the recent launch of the Women and PD Initiative and the PD SELF program, which are training patient advocates to address unmet needs.  In 2016, PDF is investing $500,000 for patient leadership programs.

About the Parkinson's Disease Foundation
The Parkinson's Disease Foundation® (PDF®) is a leading national presence in Parkinson's disease research, education and public advocacy.  We are working for the nearly one million people in the US who live with Parkinson's disease by funding promising scientific research while supporting people living with Parkinson's disease through educational programs and services.  Since its founding in 1957, PDF has dedicated more than $115 million to fund the work of leading scientists throughout the world and nearly $50 million to support national education and advocacy initiatives.

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