Call Our HELPLINE: 1-800-4PD-INFO (473-4636)

Delegates From The Parkinson’s Community Converge On Capitol Hill To Advocate For Critical Research Funding

—2018 Parkinson’s Policy Forum Co-Sponsored by the Parkinson’s Foundation and the Michael J. Fox Foundation for Parkinson’s Research—

NEW YORK, NY; March 5, 2018 – The Parkinson’s Foundation and The Michael J. Fox Foundation for Parkinson’s Research (MJFF) will convene more than 300 advocates from across the United States, along with leading experts in Parkinson’s research, public policy and advocacy, on March 19–21 in Washington, D.C. for the 2018 Parkinson’s Policy Forum. The event is also supported by nine other Parkinson’s organizations across the country. This powerful advocacy event invites people with Parkinson’s disease (PD) — which affects nearly 1 million individuals across the country — to share their stories of the personal impact PD has made on their lives and the lives of their loved ones.

Forum delegates, primarily people with Parkinson’s disease, their families and care partners, will receive tools to develop and hone their skills for effective public policy advocacy as they prepare to meet with their senators and representatives. During the event’s first two days of training, attendees will hear from scientific and policy experts at the Parkinson’s Foundation and The Michael J. Fox Foundation on the latest developments in PD research. Panelists also will highlight recent legislative action to increase access to health care services, including the elimination of the Medicare therapy cap, which advocates worked for many years to remove.

The third and final day of the event will focus on congressional outreach. Advocates will conduct meetings on Capitol Hill to educate members of Congress on the needs and priorities of the PD community. Specifically, they will speak about the need for increased federal research funding for the following federal programs and agencies:

  • Centers for Disease Control and Prevention’s National Neurological Conditions Surveillance System, which will collect vital patient demographic information to help researchers refine and target their work;
  • National Institutes of Health, the largest public funder of Parkinson’s research; and
  • Department of Defense Congressionally Directed Medical Research Program for Parkinson’s disease, the only government-funded research program specifically dedicated to Parkinson’s, which investigates the military service-related links to PD.

Momentum in PD research is strong. In recent years, there have been more drugs enter clinical testing than ever before. However, there is no cure to slow or stop disease progression, and current therapies are limited in their ability to address symptoms over time. Age is the greatest risk factor for Parkinson’s. As the population grows older, the need for new and improved treatments will become even more urgent. It is critical that lawmakers address this by increasing federal investments in medical research, as well as supporting policies that preserve and expand access to care.

 “People with Parkinson’s disease should be able to live the fullest life possible, and that means securing commitments to federal programs that support them and their families,” said John Lehr, CEO of the Parkinson’s Foundation. “The Parkinson’s Foundation leverages our nationwide network of healthcare professionals and research advocates to mobilize around PD community policy priorities. Parkinson’s advocates are some of the most passionate voices you’ll hear on these issues, and we want to ensure that they continue to have a seat at the table with lawmakers,” he added.

“The Parkinson’s Policy Forum is an annual event for people with Parkinson’s and their families, care partners, and friends who are interested in public policy advocacy. Scientific discovery at the federal level leads to new treatments and cures for countless individuals living with chronic conditions, including Parkinson’s. As the largest nonprofit funder of Parkinson’s research, The Michael J. Fox Foundation exists to leverage this federal investment in basic science and see that scientific breakthroughs are carried across the finish line,” said MJFF CEO Todd Sherer, PhD. “As more individuals are diagnosed with Parkinson’s, the urgent need for new therapies will continue to grow. Increased investments, from both the public and private sectors, are needed to accelerate results for patients and their families.”

About the Parkinson’s Foundation 
The Parkinson’s Foundation makes life better for people with Parkinson’s disease by improving care and advancing research toward a cure. In everything we do, we build on the energy, experience and passion of our global Parkinson’s community. For more information, visit www.parkinson.org or call (800) 4PD-INFO (473-4636).

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 A research study in humans that aims to test a new intervention – this could be a drug, surgery or therapy like exercise or diet guidelines – to make sure it is effective and safe. participants, donors and volunteers. In addition to funding more than $800 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. For more information, visit us on the Web, Facebook, Twitter, LinkedIn and Pinterest.

About Parkinson’s Disease 
Affecting nearly 1 million Americans and 10 million worldwide, Parkinson’s disease is the second-most common neurodegenerative disease after Alzheimer’s and is the 14th-leading cause of death in the United States. It is associated with a progressive loss of motor control (e.g., shaking or tremor at rest and lack of facial expression), as well as non-motor symptoms (e.g., depression and anxiety). There is no cure for Parkinson’s and 60,000 new individuals are diagnosed each year in the United States alone.

Monday, March 5, 2018
FDA Approves Drug to Treat Parkinson’s Disease Psychosis
Friday, April 29, 2016

Today, the FDA approved Nuplazid (pimavanserin) as the first drug to treat hallucinations and delusions associated with Parkinson’s disease psychosis, which affects up to 40% of people with Parkinson’s.

FDA Panel Backs Approval of Pimavanserin
Tuesday, March 29, 2016

Big News for Advanced Parkinson’s

Lea Dempsey, Seventh Grader from NJ, Designs Winning Parkinson’s Awareness T-Shirt
Thursday, March 24, 2016

A digital drawing by 13-year-old Lea Dempsey of Princeton, NJ, came out on top in the Parkinson’s Disease Foundation’s (PDF) Seventh Annual Parkinson’s Awareness T-Shirt Design Contest. In PDF’s “kids only” contest, Ms. Dempsey’s design was a contender along with 20 other submissions from children ages five to 15-years-old. Her design was chosen as the winner by the general public in an online vote.

National Parkinson Foundation Campaign Promotes the Power of Exercise During Parkinson’s Disease Awareness Month
Monday, March 21, 2016

The National Parkinson Foundation (NPF) launched the #Move4PD campaign in recognition of National Parkinson’s Disease Awareness Month today. The campaign’s goal is to highlight the importance of exercise for those with Parkinson’s disease (PD) and its positive effects on the brain.

Parkinson's Disease Foundation to Host Celebrate Spring New York on Thursday, April 7
Friday, March 18, 2016

The Young New Yorkers for the Fight Against Parkinson’s and the Parkinson’s Disease Foundation® (PDF®) will hold its ninth annual Celebrate Spring New York at Marquee located at 289 10th Avenue between 26th and 27th Streets in New York City on Thursday, April 7, 2016.   Proceeds from the evening will support PDF’s research programs.

PDF Champions Raise More Than $35,000 for Parkinson’s Research at Martinis & Bellinis Event
Monday, March 7, 2016

Norwood, NJ, resident Stephanie Goldman-Pittel and her fellow co-chairs from nearby communities raised more than $35,000 to benefit the Parkinson’s Disease Foundation (PDF) at Martinis & Bellinis, their third annual PDF Helping Hours event on March 3. More than 100 guests attended the event held at Harvest Bistro & Bar in Closter, NJ, to support Parkinson’s research.

Parkinson's Disease Foundation Launches Online Course for Occupational Therapy Practitioners
Tuesday, March 1, 2016

The Parkinson's Disease Foundation® (PDF®) is pleased to launch a new online course, Occupational Therapy: Across the Parkinson's Disease Continuum, to prepare occupational therapy practitioners who are caring for the growing population of people living with Parkinson's disease.

Parkinson's Disease Foundation Invests in Next Generation of Nursing Leaders
Wednesday, February 24, 2016

The Parkinson's Disease Foundation® (PDF®) is pleased to announce eight new training opportunities for nursing faculty as part of The Edmond J. Safra Visiting Nurse Faculty Program at PDF. The program improves nursing care in Parkinson's disease (PD) by training nurse faculty leaders who in turn, prepare their students to fight the disease on the front lines.

PDF Champions to Host Martinis & Bellinis for Parkinson’s Research at Harvest Bistro & Bar in Closter, NJ, on Thursday, March 3
Tuesday, January 26, 2016

WHAT:  Norwood, NJ, resident Stephanie Goldman-Pittel is inviting her community to Harvest Bistro & Bar in Closter, NJ, for post-work cocktails to support the Parkinson’s cause. She and her fellow co-chairs from nearby communities are hosting Martinis & Bellinis, their third annual Helping Hours event to benefit the Parkinson’s Disease Foundation (PDF) on Thursday, March 3 from 7:00 PM to 10:00 PM.

PDF Mourns the Passing of Joel Gerstel
Tuesday, January 26, 2016

The Parkinson’s Disease Foundation (PDF) mourns the loss of Joel Gerstel, a long-time friend and partner in the Parkinson’s community. Mr. Gerstel, who served as President and CEO of the American Parkinson Disease Association (APDA) until 2012, passed away on January 21 at the age of 80.

Pages

mail icon

Subscribe to get the latest news on treatments, research and other updates.