Acknowledgments

ENDING PARKINSON’S DISEASE WAS A TRUE TEAM EFFORT. IT took four authors supported by a cadre of contributors, experts, readers, and institutions to make the book a reality. We thank each of them. For those that we miss here, we apologize and look forward to thanking you in person and on our website (www.endingPD.org).

Numerous individuals contributed their stories to this book and its development. They include Jay Alberts, Kevin Biglan, Trudy Bloem, Clifford Boothe, Eric Caine, Jimmy Choi, Lucien Côté, Scott DeHollander, Bob Dein, John Dorsey, Frida Falcon, Marcus Falcon, Lori Lou Freshwater, Danny Fromm, Don Gash, Jason Harvey, Jane Horton, Lyndsey Isaacs, Myra Kooy, Hyam Kramer, Alan Leffler, Max Little, Terri McGrath, Patti Meese, Eli Pollard, Judy Rosner, Jonathan Silverstein, Richard Stewart, Chuck Vandenberg, Bob van Gelder, Guy Wilcox, and many others who are not named. They all made the book come alive.

To ensure the book was accurate, we asked many friends, colleagues, and experts from a wide range of disciplines to review our work or to make suggestions. Some of them are the authors of the studies featured in the book. We thank Roy Alcalay, Alberto Ascherio, James Beck, Karen Berger, Gretchen Birbeck, Cynthia Boyd, Heiko Braak, Honglei Chen, Nabila Dahodwala, Polly Dawkins, Alexis Elbaz, Victor Fuchs, Rebecca Gilbert, Tim Greenamyre, Christine Hay, Karl Kieburtz, Allison Kurian, Samantha King, William Langston, John Lehr, Hamilton “Chip” Moses, Marten Munneke, Jon Palfreman, Leilani Pearl, Bart Post, Briana Rae, Deborah Slechta, Katrina Smith Korfmacher, Sara Riggare, Ira Shoulson, Lenny Siegel, Caroline Tanner, Allison Willis, and others. Not everyone agreed with every conclusion we reached, but all provided valuable guidance and added rigor to the book’s development.

We also thank the US Environmental Protection Agency for providing data on Superfund sites contaminated with trichloroethylene.

Ending Parkinson’s Disease also benefitted immensely from the critical review of countless readers from within and outside the Parkinson’s community. They had the patience to plough through far more technical earlier drafts so you would not have to. We are indebted to Jeffrey Alexis, Paul Cannon, Robert Cohen, Steve DeMello, Chris Hartman, Chad Heatwole, Jeff Hoffman, Dan Kinel, John Markman, Victor Poleshuck, Rich Simone, Pamela Quinn, and Mark Zupan. They all gave their time and insights generously.

The talented people we work with at our great institutions helped shape, edit, research, reference, depict, and develop policy recommendations that contributed immensely to the book. At the University of Rochester, we thank Olivia Brumfield, Gerardo Torres Davila, Alistair Glidden, Reenie Marcello, Taylor Myers, Karen Rabinowitz, Kelsey Spear, Anna Stevenson, Emma Waddell, and Ellen Wagner. We also thank Bryan Ingram and Monica Piraino from Brand & Butter. At The Michael J. Fox Foundation, we thank Krishna Knabe, Maggie McGuire Kuhl, and David Lubitz. At the University of Florida, we thank Polly Glattli, Melissa Himes, Leilani Johnson, Shuri Pass, and A. J. Yarbrough. And at Radboud University Medical Center in Nijmegen, the Netherlands, we thank Hanneke Kalf, Maarten Nijkrake, and Ingrid Sturkenboom. We are especially grateful to Gerardo, Emma, and Ellen for all their work developing the book’s visuals, managing countless drafts, and incorporating hundreds of references.

Ray Dorsey thanks the University of Rochester for a sabbatical to write this book and the late David M. Levy and his family, the King family, and many others for their generosity. He thanks his colleagues at the Center for Health + Technology for their patience while he wrote and his chair, Dr. Robert Holloway, for fifteen years of unfailing support. He is grateful to the National Institute of Neurological Disorders for funding a Udall Center (grant P50 NS108676) to develop novel approaches to accelerate Parkinson’s research. The Udall Centers fund Parkinson’s research throughout the United States. They are named in memory of Congressman Morris K. Udall, who served in Congress for thirty years, the last twelve after he was diagnosed with Parkinson’s disease.

Todd Sherer thanks all the supporters of The Michael J. Fox Foundation for their commitment to the mission of seeking a cure for Parkinson’s disease. He is grateful for the advice and dedication of The Michael J. Fox Foundation’s Board of Directors, Patient Council, and Scientific Advisors. He would especially like to thank the foundation’s co-founders, Michael J. Fox and Deborah Brooks, for all that they do on behalf of the Parkinson’s community and for leading the charge to develop new treatments for Parkinson’s. At the foundation, he acknowledges the long-standing contributions of his colleagues Sohini Chowdhury, Brian Fiske, Mark Frasier, and Holly Teichholz, who have all spent countless hours over the past decade and a half to improve the lives of those with Parkinson’s disease.

Michael Okun thanks Kelly Foote and the neurosurgery team, Nick McFarland and the movement disorders neurology team, Lisa Warren and the rehabilitation team, Herb Ward, Dawn Bowers, and the psychiatry and neuropsychology team, as well as Karen Hegland and the speech and swallow team. Without the partnership and support of this interdisciplinary group, working on the book would not have been possible.

Bas Bloem thanks everyone on his amazing team at the Center of Expertise for Parkinson & Movement Disorders at the Radboud University Medical Centre in Nijmegen; a special word of thanks goes to Marten Munneke, who is the co-architect of all the innovations dedicated to Parkinson’s coming from the Nijmegen group. A big thank you to the neurologists (Rianne Esselink, Rick Helmich, Bart Post, Peter Praamstra, Suzanne ten Holter, Hanneke Thoonsen, Monique Timmer, and Bart van de Warrenburg), the Parkinson’s nurse specialists (Jacqueline Deenen, Anke Elbers, Hendriette Faassen, Chyntia Geutjes, Martha Huvenaars, Myriam Koster, and Berna Rood), and all the other members of the multidisciplinary clinical team who work relentlessly every day to provide the best possible quality of life to people with Parkinson’s and their families. A final word of thanks goes to Mark Tiemessen, who directs the Dutch ParkinsonNet and to Lonneke Rompen and Sanne Bouwman, who leads the ParkinsonNet international team.

The book benefited greatly from Aspen Words, whose team (Adrienne Brodeur, Marie Chan), teachers (Helen Schulman), agents and publishers, and wonderful fellow writers (especially Jeff Hoffman) fostered the book’s development.

Books reach readers with the help of great agents and publishers. We were fortunate to have both. We thank Gail Ross, Dara Kaye, and the remarkable group at Ross Yoon Agency for their patient and dedicated support of all of us, most of whom were first-time book authors, throughout the process. They took us to the excellent team at PublicAffairs, including Colleen Lawrie and Clive Priddle, who helped bring Ending Parkinson’s Disease to fruition. They were supported by Miguel Cervantes, Lindsay Fradkoff, Brooke Parsons, Brynn Warriner, and colleagues.

We have also been helped by outstanding editors to make our academic prose more accessible to readers. Sara LaJeunesse and especially Susannah Meadows helped transform our writing. For six weeks, Susannah, who previously worked at Newsweek and authored The Other Side of Impossible, edited each sentence of the book at least twice. She pushed for clarity, deeper insights, journalistic standards, richer detail, and a readable text. We hope that we succeeded.

More generally, Ending Parkinson’s Disease would not have been possible without the help and support of three communities. The first is those affected by Parkinson’s. The impressive ways in which individuals and families cope with this debilitating disease is a never-ending source of education and inspiration. Collectively they are, in every respect, the muse that motivated us to write this book. While we have devoted much of our training and professional careers to the disease and related conditions, none of us has Parkinson’s. We have not spent a day with a tremor or had our thinking slowed, voices softened, or independence eroded. Likewise, we have not served as care partners on a daily basis for those with the disease. This lack of personal experience profoundly limits our understanding and appreciation of its consequences. In this book, we hope to have provided a voice to those affected by Parkinson’s.

The book also rests on the community of Parkinson’s disease researchers, clinicians, and multidisciplinary care teams. We stand on the shoulders of scientific and medical giants and teachers who have characterized, identified the causes of, and developed treatments for Parkinson’s. We also have benefited from clinical leaders from multiple disciplines who have developed better ways to meet the needs of people with Parkinson’s. Their contributions, some of which are detailed in this book, have enabled us to identify better ways to address the disease. The work of these scientists and clinicians is often conducted over decades and done outside the public eye. Their contributions have shaped and formed the basis of many ideas in the book. Much of the credit for this book and our thanks go to them.

Finally, we thank our friends and families for encouraging us in this effort. We and our work are reflections of the environments that surround us. Our families have provided us the most honest and helpful critiques, allowed us to spend the necessary time to write, and supported us in countless ways. It is safe to say that they, too, have become Parkinson’s fighters. We extend our immense appreciation and gratitude to all of them, especially to our spouses, Zena, Kelly, Leslie, and Inge. We love you.