2018 Parkinson's Policy Forum

North Texas media

Tim Runte’ from Flower Mound, TX to Attend Parkinson’s Policy Forum in Washington, D.C.

Flower Mound, TX March 15, 2018 – Tim Runte’ of Flower Mound, TX will join more than 300 other advocates in Washington, D.C. on March 19 – 21 to meet with their Members of Congress to share their stories of the personal impact Parkinson’s disease (PD) has made on their lives and the lives of their loved ones. Delegates will educate lawmakers on the need for federal funding for research toward a cure for Parkinson’s, and policy support for those living with the disease.

The Parkinson’s Policy Forum is co-hosted by the Parkinson’s Foundation and The Michael J. Fox Foundation for Parkinson’s Research. The event is also supported by nine other Parkinson’s organizations across the country. The 2018 Parkinson’s Policy Forum will feature two days of training, followed by one day of advocacy, congressional outreach and education to Members of Congress on Capitol Hill.

He, along with other attendees will receive tools to develop and hone their skills for effective public policy advocacy as they prepare to meet with their senators and representatives. 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.

Mr. Runte’ will meet with Representative Michael Burgess, Representative Kenny Marchant, Senator John Cornyn, Senator Ted Cruz and their staff to talk about the need to provide federal funding for Parkinson’s research programs at the Centers for Disease Control and Prevention, National Institutes of Health, and the Department of Defense.

“I am honored to attend the 2018 Parkinson’s Policy Forum to represent the Parkinson’s community on Capitol Hill on these important issues,” said Runte. “Having served on the board of directors for a local Parkinson’s organization, I have had the pleasure of meeting many fine men and women; both with and without the disease that have reached out to our Senators and Representatives year-round at town halls and local meetings, as well as through email and phone calls” he added, “but the chance to come together with hundreds of people like me, share our journey and show our nation’s leaders what it means to live with Parkinson’s disease is powerful.”

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. Advocates from nearly all 50 states convene in Washington, D.C. for educational sessions, and meet face-to-face with their Members of Congress and their staff.

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 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 an estimated 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 cases are diagnosed each year in the United States alone.

3/15/2018

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Tim Runte

Resident of Flower Mound, Texas

3480 High Road

Flower Mound, TX 75022

The 2018 Parkinson’s Policy Forum will be held on March 19-21 in Washington, DC and is co-sponsored by Parkinson’s Foundation and The Michael J. Fox Foundation. Additionally, nine other Parkinson’s advocacy organizations have all teamed together to support the Forum.

The Parkinson’s Policy Forum unites members of the Parkinson’s Community and lawmakers to discuss and take action on pressing patient needs and policy opportunities on an annual basis. Training sessions will be held for over 300 members of the Parkinson’s community on Monday, March 19, and Tuesday, March 20. The Forum concludes on Wednesday, March 21 with “Hill Day”, a full day of meetings on Capitol Hill to raise awareness of the disease among elected officials.

As a member of the Parkinson’s community for 7 years and working with both advocacy groups and the medical community as a patient, I can’t stress enough the importance of discussing patient needs and the opportunity to expand awareness about the disease.

In 2011 I heard: “Mr. Runte’, you have Parkinson’s disease.” Those few words spoken by a neurologist to me, at the time a 41 year old relatively heathy adult, left me with no response. None. Having a very strong ‘Type A’ personality, my mind immediately went to “Doc, when am I going to die?” I needed right then to know the exact date in which I would depart this wonderful life and move on. How could I mark the milestones and important events in my Outlook Calendar without knowing when the big day would arrive? I had to make sure I wouldn’t miss my daughter Jordyn’s (9 at the time) yearly dance recital, let alone her 10th birthday. My son Lucas (8 at the time) was starting fall Little League Baseball. Can’t miss seeing him hit his first double, sending the ball all the way to the wall in center field and driving in a couple runs. Dozens, maybe hundreds of things like this were going through my Type A brain, most of which I had no immediate answers to. I left his office with a prescription for a couple medications, a 3 page pamphlet summarizing Parkinson’s disease, a referral for a “Movement Disorder” neurologist, and a heart that was racing as fast as it ever had before.

Many things have happened since that day those few words were spoken from the neurologist. I eventually got past the doom and gloom attitude and now take the approach that I’m going to do whatever is in my control to find things that afford me the opportunity to live a great life as everyone deserves.

Because of Parkinson’s, I’ve had the opportunity to build close, personal friendships with dozens of people living with Parkinson’s, their families, and the many fine neurologists, movement disorder specialists, and researchers. It’s a large, very strong network of amazing people that all have at least one thing in common: we are all living with Parkinson’s and we are not just sitting around waiting to die. The folks I’ve met and the families I’ve gotten to know in the PD circle are very positive and active about how to live large. At a grass-roots level, PD’ers in my circle of friends are involved in activities like boxing, yoga, Pilates, dance, singing (Yes, PD is a ‘movement disorder’ that can affect any and or all of your muscles and moving parts of your body including vocal chords), hosting local fundraising events, organizing local support groups that meet regularly, volunteering to take part in clinical studies, and networking among our peers around the U.S, resulting in a greatly improved quality of life. On a national level, organizations like The Michael J. Fox Foundation and the Parkinson’s Foundation team up with government researchers in the National Institute of Health to lead the way to finding a cure. It’s estimated the number of people diagnosed with Parkinson’s will double by 2042 to 12 million worldwide. And without getting into all the details, it is not something anyone should have to live with. Symptoms of this disease and side effects can be painful, embarrassing, frustrating, depressing, and very challenging to deal with on a daily basis. Many think of Parkinson’s as a disease effecting ‘old’ people. They think you get an uncontrollable tremor and that’s it. That is not the case at all. Both physical and cognitive issues can be affected by Parkinson’s, and it’s vitally important that more awareness be brought to the disease and how it fully impacts the lives of those affected.

I’ve been living with Parkinson’s for over 7 years now and unlike when I was first diagnosed and needed the end date on the calendar, I very much look forward to the future. I look forward to seeing my children graduate, walking my daughter down the aisle, and seeing a day when no one has to feel how I felt when they told me Mr. Runte’, you have Parkinson’s disease because a cure and better treatment are on the horizon.

Tim Runte’