Parkinson's Clinical Trial Companion Navigating Clinical Trials - Page 43

“Never doubt that everyday people like you and me are the most important part of the complex and expensive drug development process.” the progression of disease, which no current treatment can yet do. There are observational studies gathering new knowledge about the causes of disease, how it changes over time and how it’s linked to genetics. And there are studies that need loved ones of patients and even people with no familial link to PD. Every one of these represents a different way to get involved. Never doubt that everyday people like you and me are the most important part of the complex and expensive drug development process. Don’t believe me? Ask a scientist. They’ll tell you: All the research funding in the world doesn’t matter without the only people who can answer the question of whether the science is helping anyone — those living with the disease. So where do we go from here? After reading this book, you and I both have a lot of options. We’ve gained a better understanding of how clinical trials work. We’ve been reminded of the importance of research. And our consciousness has been raised to the critical need for more participants. So let’s put that information into action. Start with small steps: Talk to your doctor about clinical studies in your area, ask people you know with PD what’s caught their attention, and register for Fox Trial Finder (foxtrialfinder.org). You’ll be participating in a trial before you know it. People volunteer for research for different reasons: to take control, get early access to new medications or be seen by doctors at top research centers. But when all is said and done, the why of it doesn’t matter as much as that more of us simply do it. I started out with one objective — to get into a trial for a new drug that may slow progression. Over time, I continued for more altruistic reasons — I don’t want my children and grandchildren to have to deal with Parkinson’s. As it turns out, even if I think I’m doing this for other people, with every study I benefit too. I learn something new about the disease, myself, or both. And I come away from every appointment feeling a renewed sense of my own power to change the course of Parkinson’s disease history. There are still too many questions about Parkinson’s. But as Michael J. Fox has said, we can be part of the answer. In fact, we’re the only ones who can. Join me. Gary Rafaloff Gary Rafaloff, 65, was diagnosed with Parkinson’s at age 60. He lives in Marlboro, New Jersey, with his wife, Bobbi. When he’s not “shaking up the community” to advance Parkinson’s research, Gary can be found spending time with his three children and two grandchildren, practicing tai chi, and adding a second scoop to his nightly dish of rocky road ice cream. Afterword: Where Do We Go from Here? 41