John Alexander of Lake Mary, Florida 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.
John Alexander and 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.
John Alexander will meet with Senator Bill Nelson and Marco Rubio; and Representatives Stephanie Murphy, Bill Posey, Gus Bilirakis, and Charlie Crist 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 John C. Alexander. “I reach out to my Senators and Representative 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.
John Alexander’s Parkinson Disease is monitored by his medical team at the University of Florida’s Center for Movement Disorder and Neurorestoration. In 2016, John became the first person in the United States to be implanted with the Abbott Infinity Deep Brain Stimulation Device. The control that that procedure provided over several Parkinson’s Disease related symptoms, such as tremor, rigidity, and Dystonia, has greatly improved his quality of life,
John Alexander is a sought after inspirational speaker, focusing on resilience and overcoming challenges. John also serves as an Ambassador for the Davis Phinney Foundation for Parkinson’s, an organization whose mission is to help people with Parkinon’s to “Live Well Today.” John is the author of a book about his experience living with Parkinson’s Disease, entitled, “The Journey Begins With 1,000 Miles – Thriving With Parkinson’s Disease through Hope, Optimism, and Perseverance.” He resides in Lake Mary, Florida with his wife of 43 years, Laura.