EXPANDING OUR REACH ANNUAL REPORT 201 9 WHY WE REACH TO MAKE LIFE BETTER: MEET CHRISTINA I was diagnosed with Young-Onset Parkinson’s you will find a community, like the Parkinson’s “ disease in October 2018. I was only 33 years old. Foundation; nor will it tell you that you will find My two daughters were 2 and 6 years old. I had new friends who will zip up your daughters’ symptoms for more than a decade, starting jackets when they know your hands can’t do with an obvious tremor in my right foot that it themselves. developed into a severe limp. I slowly started not being able to do some basic things without The Parkinson’s Foundation has been reliable, difficulty, like zipping up my daughters’ jackets. encouraging and incredible. They love us like family. They embrace not just me, but my An online search of Parkinson’s symptoms husband and two daughters. I’m thankful cannot explain how unpredictable this disease and feel that if anyone is struggling with their can be and why some days you feel like a recent diagnosis“ or life with Parkinson’s, rely superhero, and why others you struggle to get on the Foundation because you will find a your shoes on. A search won’t tell you that home there. after being diagnosed with this disease, Christina Korines is living with Parkinson’s. She gave the keynote speech at the Parkinson’s Foundation 2019 New York Gala. 1 This excerpt is part of her speech that inspires us to do more. ANNUAL REPORT 201 9 MESSAGE FROM THE CEO Together, we expanded our reach in 2019, making life better for our Parkinson’s disease (PD) community by developing our care, research and education efforts. We impacted more people than ever before — launching exciting new research initiatives, reaching the underserved and closing the information gap for the 60,000 Americans newly diagnosed this year. In 2019, we launched two new initiatives that will significantly impact the lives of people living with Parkinson’s: • PD GENEration: Mapping the Future of Parkinson’s Disease is a national initiative that offers free genetic testing for clinically relevant PD-related genes and free genetic counseling. By contributing genetic testing results to this flagship program, we have the opportunity to help accelerate scientific research to improve our understanding of PD and potentially identify new and/or better treatment options. • Newly Diagnosed: Building a Better Life with Parkinson's Disease is a program that connects those newly diagnosed with the right information and resources to live better with PD. We want them to know that they are not alone in this journey and that we are here to help. Last year, we honored former Pennsylvania Governor Edward G. Rendell for his contributions to the Parkinson’s community. His words inspire us to further our reach. “Can I say that I am going to defeat Parkinson’s? Not yet,” Governor Rendell said. “Someday soon maybe people will be able to say that. Can I say I’m going to fight this as long as I can? Absolutely.” Our 2020 goals are designed to inspire optimism as we continue to support our international community. The individual donors, foundations and corporations in this Annual Report help us change lives every day and get us closer to the promise of a cure. Thank you for your incredible support in 2019 and in the new decade. Together, we are a powerful force in the fight against Parkinson’s Foundation CEO and President John Lehr; Parkinson’s disease! former Governor of Pennsylvania Edward G. Rendell; Chairman and CEO of Johnson & Johnson Alex Gorsky; Thank you, and television personality Willie Geist at the Parkinson’s Foundation New York Gala on May 7, 2019. John L. Lehr Howard D. Morgan President and Chairman of the Board Chief Executive Officer 2 EXPANDING OUR REACH IN CARE Expert care is critical to living better with deliver expert PD care. Together, we are improving Parkinson’s. It can improve quality of life and specialized professional training — from in-person lower the risk of complications, which is why we are sessions to online courses — created for nurses, committed to make expert care more accessible. physical therapists and other professionals devoted We identify, support and connect people living with to delivering the latest in proven PD care techniques. Parkinson’s with premier treatment and research In 2019, we launched a new online nurse course that centers worldwide. provides essential educational tools for nurses to deliver optimal care through all stages of PD. We designate Parkinson’s Foundation Centers of Excellence — the largest network of Parkinson’s clinics. We can all play a role as Parkinson’s advocates to These centers house teams specialized with deep change the way people with Parkinson’s receive care expertise in the latest PD medications, therapies and in hospitals, which is why the Parkinson’s Foundation research that altogether treat more than 193,500 created the Aware in Care Ambassador Program. people with Parkinson’s. This volunteer group distributes hospital kits that bolster best practices in treating people with In the last two years, we added six Centers of Parkinson’s to patients and healthcare providers. Excellence to our global network of 47 leading medical Armed with resources and the latest information, centers. Each recently designated center brings us 81 ambassadors across 30 states actively help us to new, underserved PD communities in: Colorado, educate hospital staff and community members Indiana, Pennsylvania, Ohio, South Carolina and Iowa. nationwide to make life better for people with Parkinson’s. As the prevalence of Parkinson’s is expected to increase with our aging population, we work to ensure Find out how we are expanding our reach healthcare professionals are better prepared to in care at Parkinson.org/ExpertCare. 3 | REACHING THE NEWLY DIAGNOSED To help provide better outcomes for the 60,000 people who are newly diagnosed each year in the U.S., the Parkinson’s Foundation recently launched Newly Diagnosed: Building a Better Life with Parkinson’s Disease. This new campaign is designed to close the gap between diagnosis and utilizing the right information and resources to live better with PD. Learn more at Parkinson.org/NewlyDiagnosed. “ I began doing advocacy work for State with a new Center of Excellence Parkinson’s disease two years after State with existing Center of Excellence I was diagnosed. I have been a Research Advocate with the Parkinson’s Foundation for 11 years, served on the advisory committee for three years and now also serve as an Aware in Care Ambassador. Though PD ended my career as a scientist, my association with the Parkinson’s Foundation opened a lot of new doors for me.” — Girija Muralidhar, living with Parkinson’s Dan Chihos This is the place for answers about Parkinson’s. Have you ordered your free Aware In Care Kit from the Foundation? It is free of charge and will make a huge difference if and when you have to stay in the hospital. Easy thing to do! 4 EXPANDING OUR REACH IN RESEARCH Catherine Weindel, PhD – Parkinson’s Foundation Research Award Recipient, Texas A&M Health Science Center The Parkinson’s Foundation knows that a We have supported more than 550 scientists research breakthrough can happen at any time through grants that keep researchers and doctors and in any lab, which is why we invested $12.2 million in the Parkinson’s research field. In 2019, we funded this year to explore what causes Parkinson’s, how to $4.2 million across 46 research grants to advance treat it and how to find a cure. promising research in labs across the world. We support early-career and established investigators In 2019, we funded four institutions that will each as they uncover new biological and clinical insights receive $2 million to design and launch Parkinson’s- to deliver improved Parkinson’s therapies. specific research studies over the next four years. These Parkinson’s Foundation Research Centers Our knowledge of Parkinson’s has changed aim to drive innovative developments and advance significantly, so has our understanding of how Parkinson’s research at an even faster rate. The many people have this disease through our four prestigious institutions designated as Research Parkinson’s Prevalence Project. This study Centers include: Columbia University Medical Center; established the most accurate number of people University of Florida in collaboration with Emory with Parkinson’s in the U.S., showing that 1.2 million University; University of Michigan in collaboration with people will be newly diagnosed with Parkinson’s The University of Texas Southwestern Medical Center; by 2030. and Yale School of Medicine. 5 REACHING MORE PEOPLE THROUGH GENETICS Our understanding of the role genetics plays in Parkinson’s has dramatically changed in the past 20 years. As we progress towards precision medicine in Parkinson’s, the Foundation launched a new study called PD GENEration: Mapping the Future of Parkinson’s Disease. The first-of-its-kind national initiative offers free genetic testing and counseling to accelerate enrollment in clinical trials. Between 10 and 15 percent of participants can expect to find out if they have a genetic risk factor for Parkinson’s. Results will also be accessible in the future to help us develop improved treatments. The Parkinson’s Foundation supports promising “ I’m planning to become part of research to help drive change and make life better the PD GENEration study to get a for people with Parkinson’s. Since 1957, we have better understanding of my disease, funded more than $353 million in groundbreaking and to contribute to research that research, transforming the way we diagnose and will improve future care.” treat Parkinson’s.