2017 ABOUT THE P SYMBOL The Parkinson’s Foundation logo in the shape of an uppercase letter “P” not only stands for Parkinson’s — it also suggests a speech bubble reflecting the many voices in the global Parkinson’s community that contribute to our mission. “ The Parkinson’s Foundation has changed my life. By introducing me to the power of exercise, through a Foundation-funded exercise class, I am healthier today than when I was diagnosed with Parkinson’s more than 11 years ago. The Foundation’s information and resources have helped me understand the issues I am facing and how I can live a healthier and more productive life. More importantly, the Foundation has introduced me to a community of incredible people that care for and support each other as we progress with the disease.” Jim Morgan, 60 Living with Parkinson’s disease alongside the support of his wife, Missy. Parkinson’s Foundation South Florida Chapter Committee Member, Moving Day Miami Team Captain 1 MESSAGE FROM THE CEO I am pleased to present the first annual report for the Parkinson’s Foundation representing our 2017 achievements. In 2016, two legacy organizations, the National Parkinson Foundation (NPF) and the Parkinson’s Disease Foundation (PDF), merged to form the Parkinson’s Foundation. This report reflects the seminal milestones of our 60-year combined history as an organization. For the one million Americans currently struggling with Parkinson’s, it is imperative that we make progress today. The Parkinson’s Foundation is the leader in understanding Parkinson’s through research; ensuring better medical care; and educating and empowering the Parkinson’s community. These guiding pillars of our work will allow us to take a chronic, degenerative disease and give people hope of independence and quality of life. Within these pages, you will learn how we are helping people like Jim Morgan (adjacent page) who has been living with Parkinson’s for more than a decade. He is not letting Parkinson’s slow him down and he is a strong voice within the Parkinson’s community. With the support of researchers, health care professionals, volunteers and donors around the world, we can create better lives for people like Jim; but we can only do this together. In 2018, we transition to new board leadership at the Parkinson’s Foundation. John W. Kozyak, Esq. has served as Chairman of the Parkinson’s Foundation Board of Directors and will be retiring from this post. We thank John for his decade of service on behalf of the Parkinson’s community and his tremendous efforts to bring NPF and PDF together. We warmly welcome Howard Morgan as the incoming Chairman. In the year ahead, we have many promising research initiatives and 60,000 more Americans who will be newly diagnosed to support. We could not do this without your commitment to the cause. Thank you for believing in our mission to make life better for people with Parkinson’s and their families. Thank you, ABOUT THE PARKINSON’S FOUNDATION The Parkinson’s Foundation makes life better for people with Parkinson’s disease by improving care and John L. Lehr advancing research toward a cure. In everything we do, President and Chief Executive Officer we build on the energy, experience and passion of our global Parkinson’s community. Parkinson’s Foundation Pictured on cover: JoAnn Roberts, living with Parkinson's, alongside the support of her husband Charles and daughter Kori. • Photography by Juan Silva. ANNUAL REPORT • 2017 2 Understanding Parkinson’s through Research “I was at a critical point in my novel deep brain stimulation study when I received a grant from the Parkinson’s Foundation. The grant allowed me to continue my work and further explore this Parkinson’s disease treatment. It is really encouraging to have my work supported by the Parkinson’s Foundation, especially as a post doctorate.” — Jing Wang, PhD Parkinson’s Foundation Postdoctoral Fellow Research Associate, University of Minnesota Since 1957, the Foundation has invested more In 1997, Foundation postdoctoral fellow, Dr. than $330 million in Parkinson’s research Roger Duvoisin discovered the first Parkinson’s- and clinical care. After 60 years of working to associated gene called alpha-synuclein. In defeat Parkinson’s, we reflect on Foundation 2008, Rush University researchers, along with investments that have revolutionized the field. a team in Sweden, found the first evidence In 1967, Dr. Melvin Yahr, a leader of the that Parkinson’s spreads from cell to cell. Parkinson’s Foundation, and Dr. Margaret Hoehn, a Foundation postdoctoral fellow, developed the first standard tool to measure Parkinson’s progression at Columbia University, now a Parkinson’s Foundation Center of Excellence. These discoveries have proven critical to new treatments under development. Two years later, Dr. Yahr published the first blind clinical trial of levodopa, proving that the Today, we work toward the next breakthrough. medication could relieve Parkinson’s symptoms. Just three years ago, we initiated the In the 1980s, Dr. Stanley Fahn, longtime member Community Choice Research Awards, funding on the Foundation’s Board of Directors, and Dr. top research priorities as identified by the Harold Klawans at Rush University, a Center of Parkinson’s community. The Foundation Excellence, established what is now the largest also continues the largest clinical study of movement disorders training program in Parkinson’s disease in the world, the Parkinson’s the world. Several years later, Dr. Fahn and Outcomes Project, which tracks more than colleagues developed the Unified Parkinson’s 10,000 people with Parkinson’s and caregivers Disease Rating Scale – still used in clinical trials. since 2009 to better comprehend Parkinson’s. Fernando Cubillos, MD, furthers Parkinson's research 3 as the Director of Research Programs at the Foundation. Understanding Parkinson’s through Research Better Research Together, the Parkinson’s Foundation collaborates with the brightest minds in Parkinson’s research through grants and awards. The Foundation has supported more than 400 scientists who work to better understand Parkinson’s. Fernando Cubillos, MD, furthers Parkinson's research Learn more about our ongoing research 4 as the Director of Research Programs at the Foundation. at Parkinson.org/Research. Better Care Together, the Parkinson’s Foundation works with health care professionals. We created the first clinical team training program, called Allied Team Training for Parkinson’s, which has trained more than 2,000 health care professionals in North America. Learn more about our expert care initiatives 5 at Parkinson.org/ExpertCare. Setting the Standards for Expert Care Worldwide “This training will change my group practice and how we interact as a team. More efficient teams mean better care. Allied Team Training for Parkinson’s training has created the vehicle to drive us as a team in the achievement of our goal for exceptional care.” — George Wong, MD Allied Team Training for Parkinson’s Attendee Neurologist, Co-Director at Jared Neuroscience Center Only 10 percent of the one million Americans The Foundation was the first to champion the diagnosed with Parkinson’s in the U.S. receive the comprehensive care team model, now standard highest standard of care. The Parkinson’s Foundation at clinics across the country. In 1998, the Foundation is accelerating its efforts to address this inequity launched its toll-free Helpline to provide care, support so people with Parkinson’s get the care they need, and referrals to people with Parkinson’s and their wherever they families in English and Spanish. live. The next generation of healthcare professionals Our vision must have the knowledge and skills to provide to provide comprehensive care to people with Parkinson’s, the highest which is why the Foundation has always been at the standard of forefront of training healthcare professionals through care to more people with Parkinson’s advanced in programs like Allied Team Training for Parkinson’s. 1990 when the Foundation established the “center In addition to providing free webinars and training of excellence” model. To date, we have designated courses, the Foundation has trained more than 235 42 premier treatment and research centers nurse faculty and 30 physical therapy faculty, who go worldwide as Centers of Excellence where health on to teach thousands of students each year. We offer professionals who specialize in Parkinson’s work the only Parkinson’s-tailored faculty training together to set the highest standards of care. It is programs to prepare nurses and physical therapists the largest network of Parkinson’s clinics in the world, to better educate students on how to care for people currently treating more than 119,000 people with with Parkinson’s. Parkinson’s. Robert L. Schwartz is living with Parkinson's 6 and enjoys dancing. Empowering the Parkinson’s Community “My involvement within the Parkinson’s community took off exponentially as a result of the Parkinson’s Advocates in Research Learning Institute. It opened numerous doors and introduced me to people with Parkinson’s, care partners and scientists that I now consider lifelong friends. ” — Linda Morgan, RPh, MBA Parkinson’s Foundation Research Advocate Living with Parkinson’s disease The Parkinson’s Foundation believes in been distributed to people with Parkinson’s, empowering every person with Parkinson’s to be ensuring they get the best possible care when their own advocate. This drives us to continue hospitalized. providing better and more accessible resources — The Parkinson’s Foundation continues to localize from Parkinson.org and free educational books programs, resources and awareness, which is to videos and podcasts — while strengthening why in 2011, the Foundation created what is now and furthering the reach of our community- the largest grassroots Parkinson’s awareness based programs. event — Moving Day, A Walk for Parkinson’s, In 2006, the Foundation became the first which promotes exercise and wellness.