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2019 Spring/Summer Highlights of Hope

RESEARCH MEETING THE

RESEARCH MEETING THE GRAND CHALLENGE OF NON-MOTOR SYMPTOMS IN PARKINSON’S DISEASE In September, the Institute hosted its annual Grand Challenges in Parkinson’s Disease symposium and Rallying to the Challenge meeting. Nearly 300 scientists, physicians and people with Parkinson’s spent two days intensely focused on the non-motor symptoms of Parkinson’s, a diverse group of problems that play a major role in quality of life and provide important clues for better understanding a condition that affects 7 to 10 million people worldwide. Here are some major takeaways: Non-motor symptoms provide a unique window into the underpinnings of a complicated and often mystifying disease. Take, for example, two common non-motor symptoms of Parkinson’s — gastrointestinal issues and loss (or reduction in) sense of smell. Scientists believe a perfect storm of circumstances, such as a combination of genetic risk and long-term exposure to these inflammatory environmental factors, could trigger the processes that eventually lead to the disease’s hallmark movement-related symptoms. Non-motor symptoms have a substantial effect on quality of life — sometimes even more so than motor symptoms such as tremor. This was the major takeaway from Rallying to the Challenge, our annual meeting for people with Parkinson’s, advocates and care partners hosted in collaboration with The Cure Parkinson’s Trust. In all, participants underscored the great need for urgency in addressing these symptoms. Evidence suggests that the gut and the nose may be starting points for the disease thanks in part to their exposure to factors in the outside environment, and that persistent digestive issues such as constipation and loss of sense of smell may be early symptomatic warning signs. Specifically, they have suggested the creation of a scale that prioritizes potential therapies for translation into the doctor’s office based on the needs of the patient community, which would help ensure scientists’ priorities are in alignment with people with 8 | VAN ANDEL INSTITUTE HIGHLIGHTS OF HOPE

. . . In the coming decades, the number of Parkinson’s cases is expected to double to more than 14 million worldwide. Parkinson’s. In a fitting tribute, Ralliers have suggested that it be called the “Isaacs Scale” in honor of Trust co-founder Tom Isaacs, a passionate and beloved Parkinson’s advocate who passed away in 2017. Ralliers also: • Emphasized the importance of clear communication around sensitive issues, such as thinking and memory in Parkinson’s. • Explored reframing how fatigue is discussed to ensure that it is clearly differentiated from tiredness. • Discussed the benefits of exercise on non-motor symptoms. • Highlighted the challenges and importance of objectively measuring non-motor symptoms. Working together is the way forward. Parkinson’s isn’t pulling any punches and neither should we. It’s a complicated, tough disease that can vary greatly from person to person, and we have to tackle it from all sides. It’s also an increasingly pressing problem — in the coming decades, the number of Parkinson’s cases is expected to double to more than 14 million worldwide. That’s why events like Grand Challenges in Parkinson’s Disease and Rallying to the Challenge are so valuable — they bring together scientists with different expertise, physicians and people with Parkinson’s, creating a catalyst for new ideas, sparking new conversations and, importantly, ensuring everyone is working together. To stay up to date on next year’s Grand Challenges in Parkinson’s Disease symposium and Rallying to the Challenge meeting, please visit grandchallengesinpd.org or follow us on Facebook at facebook.com/ grandchallengesinpd. Common Parkinson's disease non-motor symptoms: • Loss of sense of smell • Constipation • Insomnia • Fatigue • Cognitive decline THE 2018 GRAND CHALLENGES IN PARKINSON’S DISEASE SYMPOSIUM & RALLYING TO THE CHALLENGE MEETING. VAN ANDEL INSTITUTE HIGHLIGHTS OF HOPE | 9

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