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2014 Fall Highlights of Hope

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FALL 2014 VAN ANDEL INSTITUTE’S HIGHLIGHTSof HOPE Ron Rutkowski Rallying to the Challenge: You + Us = A new way of viewing Parkinson’s disease clinical trials RON RUTKOWSKI IS A WEST MICHIGAN CONTRACTOR, COMMUNITY LEADER AND VAN ANDEL INSTITUTE SUPPORTER WHO WAS DIAGNOSED WITH PARKINSON’S DISEASE 10 YEARS AGO. Unsatisfied with the current system of clinical trials for Parkinson’s disease treatments, Rutkowski raised more than ,000 in support of Rallying to the Challenge, an event focused on the contributions of people with Parkinson’s to clinical trials. The event was held in conjunction with the Institute’s Grand Challenges in Parkinson’s disease symposium on September 24–25, 2014. Patient Advocates U.K.-based Parkinson’s activist and founder of The Cure Parkinson’s Trust, Tom Isaacs, was diagnosed with Parkinson’s disease when he was 27 years old. Isaacs has become a leading advocate for improvements in the Parkinson’s disease clinical trial system. “To people with Parkinson’s, clinical trials represent the only means of improving the treatment of their disease and improving the quality of their lives,” Isaacs said. A Discussion about Hope Isaacs and The Cure Parkinson’s Trust partnered with Van Andel Research Institute (VARI) to create Rallying to the Challenge, a meeting that brought together people with Parkinson’s, advocates and caregivers to discuss ways to improve clinical trials. Dr. Patrik Brundin, VARI’s associate director of research and director of the Center for Neurodegenerative Science, believes that changes in the clinical trial system can evolve from an open dialogue between those with Parkinson’s and those involved with disease research. “We have a commitment to people with Parkinson’s to find ways around the obstacles that stand in our path to successful clinical trials,” Brundin said. Rutkowski and Isaacs were part of the Rallying to the Challenge panel made up of more than 20 advocates. Take Action Today Do you know someone living with Parkinson’s disease? Are you curious about the Institute’s groundbreaking Parkinson’s disease research? Learn more or make a donation at THANK YOU BOARD OF GOVERNORS CO-CHAIRS FOR SHARING YOUR TIME AND TALENT! We’d like to thank longtime supporters Timothy Long and Vicky Ludema for accepting the position of co-chairs of Van Andel Institute’s Hope on the Hill Board of Governors. Long and Ludema will lead this important group of ambassadors, and we look forward to sharing their stories of involvement and support of the Institute in the future. Thank you for leading the Board of Governors. We are grateful for your time, dedication and commitment to the Institute’s mission! Timothy Long and Vicky Ludema 2 | Van Andel Institute Highlights of Hope

Pathway of Hope Brings Light to Rare “Linchpin” Disease THE PATHWAY OF HOPE TUBEROUS SCLEROSIS COMPLEX RESEARCH INITIATIVE BEGAN IN 2013. ORGANIZED BY VAN ANDEL RESEARCH INSTITUTE’S (VARI) DR. JEFF MACKEIGAN, THE INITIATIVE AIMS TO DEVELOP NEW, EFFECTIVE TREATMENTS FOR INDIVIDUALS WITH TUBEROUS SCLEROSIS COMPLEX (TSC). Brain Eyes Lungs Heart Kidneys Nails Skin above: (TSC) tuberous sclerosis complex causes non-cancerous tumors in major organs. middle: MacKeigan’s team right: TSC tumors “CURRENT TSC TREATMENTS SHRINK TUMORS, BUT IT WOULD BE AMAZING IF WE COULD ACTUALLY PREVENT OR ELIMINATE THEM ALL TOGETHER.” –Dr. Jeff MacKeigan A Complicated Disease TSC causes non-cancerous tumors in major organs, and patients afflicted with the disease often suffer from epilepsy, learning disabilities and other complications. VARI’s Pathway of Hope project involves TSC experts and investigators from across the United States. The project is funded in part by the Michigan Economic Development Corporation along with generous support from private donors. Making Progress “I am extremely proud of the progress that our team has made over the past year. We have assembled truly phenomenal scientists and clinicians to deliver on an ambitious research agenda targeting new treatment options for TSC patients,” said MacKeigan. He views this rare childhood disease as a linchpin disease, meaning that understanding more about TSC and how to treat it on the molecular level could inform treatments for neurological disorders and cancer. Collaboration is Key Through clinical collaborations with Helen DeVos Children’s Hospital in Grand Rapids, Mich. and the Cincinnati Children’s Hospital Medical Center, MacKeigan’s group opened a personalized medicine feasibility study. This study identified patients currently living with TSC who would be ideal candidates for possible TSC treatment clinical trials in the future. Through these trials, MacKeigan believes that his team can uncover more personalized, targeted therapies. “We are aggressively searching for those novel mutations that can provide significant therapeutic opportunities with real benefits for patients,” said MacKeigan. “Current TSC treatments shrink tumors, but it would be amazing if we could actually prevent or eliminate them all together.” Thank You for Your Support The Pathway of Hope TSC research initiative is the product of multiple public and private donors and a working example of how donors can have a direct impact on improvements in human health. Your donations push research further! Van Andel Institute Highlights of Hope | 3

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