Scientists are turning the corner on“the cure” — moving closer to predicting and preventing Parkinson’s for the estimated 1 million Americans who live with this degenerative neurological disease. And patients have increasingly become the source of powering Parkinson’s disease (PD) research. As the real experts on their disease, people with Parkinson’s are a critical link in helping researchers paint a more complete picture of PD.
Fox Insight (FoxInsight.org), an online study sponsored by The Michael J. Fox Foundation for Parkinson’s Research (MJFF), is crowdsourcing data from people with and without Parkinson’s to provide researchers with a more holistic understanding of the disease. By contributing self-reported and genetic data at scale, Fox Insight study participants are partnering with researchers to share critical insights that could aid in the discovery of medical breakthroughs for treating the disease.
From the comfort of their own homes, Fox Insight participants complete online “study visits” every 90 days by responding to questionnaires on symptoms and daily activities. Through a collaboration with consumer genetics company 23andMe, eligible participants with PD can add their genetic information to the study. Participant data is then de-identified and made available to researchers worldwide.
In less than one-year Fox Insight has enrolled more than 25,000 participants (with a goal of hundreds of thousands). The more people who take part, the faster Fox Insight could lead to research breakthroughs and ultimately, a cure.
Since its founding in 2000, MJFF has remain committed to finding a cure for Parkinson’s disease through an aggressively funded research agenda and to ensuring the development of improved therapies for those living with Parkinson’s today. To date, the Foundation has funded more than $800 million in high-impact research programs.
Recently, I had the opportunity to interview Caroline “Carlie” Tanner, MD, PhD, principal investigator of the Fox Insight trial and professor at University of California, San Francisco and Jim McNasby, a person with Parkinson’s and Fox Insight trial participant whose “if not me, then who” passion demonstrates each patient’s distinctive contribution to science as they discuss the Fox Insight Study, the current progress being made against Parkinson’s Disease, and life with Parkinson’s for nearly two decades.
See the entire interview here:
James “Jim” McNasby
General Counsel, Marsh LLC
Jim McNasby is responsible for both the Legal and Compliance departments for Marsh LLC. He is a member of Marsh’s Executive Committee, a Vice President of Marsh & McLennan Companies, a Director of the Marsh & McLennan Agency, a Director of MMCPAC, and a member of the Marsh & McLennan Companies Diversity Council. He joined Marsh as General Counsel on October 1, 2007.
Before joining Marsh, Mr. McNasby was the chief counsel for Kraft Foods North America and, prior to that, held various positions in the Legal, Compliance and Corporate & Government Affairs departments of Kraft/Altria Group in the U.S. and Europe.
He began practicing law at Davis, Polk & Wardwell after clerking for the Hon. Ronald R. Lagueux, Chief Judge of the U.S. District of Rhode Island.
He is a graduate of the University of Virginia and Harvard Law School. Currently, Jim serves on the Board of the Billy Rose Foundation and the Parkinson’s Unity Walk and is a member of The Michael J. Fox Foundation Public Policy Council.
Caroline “Carlie” Tanner, MD, PhD
Professor at University of California, San Francisco
Caroline M Tanner, MD, PhD, completed a residency in neurology and a fellowship in clinical neuropharmacology and movement disorders at Rush University and a doctorate in environmental health sciences at the University of California-Berkeley. Her clinical practice specializes in movement disorders, particularly Parkinson’s disease (PD), atypical parkinsonism and dystonia. Her research interests include investigations of descriptive epidemiology, environmental and genetic determinants, biomarkers, early detection, non-motor disease features and interventions for the secondary prevention, and disease modification and symptomatic treatment of movement disorders and neurodegenerative diseases. Her current research includes epidemiologic investigations of PD, multiple system atrophy, dystonia, Huntington’s disease, motor neuron disease, essential tremor and REM sleep behavior disorder in many populations, including the NAS/NRC World War II Veterans Twins Registry, the Agricultural Health Study, the Honolulu Asian Aging Study, the Alaska Native Medical Center, the legally-mandated California PD registry pilot project, the international LRRK2 PD-GEM study, the Chinese National Consortium on Neurodegenerative Diseases, the Shanghai Parkinson’s Study, the Shanghai Textile Workers Study, and the Bay Area Solvents Study.
Dr. Tanner is past co-chair of the Parkinson Study Group (PSG), and has conducted numerous clinical trials with the PSG, Neuroprotection Exploratory Trials in Parkinson’s Disease, and the Chinese Parkinson Study Group in China. Other research interests include work to facilitate collaborative research, including the NINDS Common Data Elements and the MDS Epidemiology Task Force, and work to identify PD-associated biomarkers in the Parkinson’s Progression Markers Initiative and the Longitudinal Assessment and Biomarkers Study of PD studies.
Dr. Tanner chairs the Epidemiology Task Force of the Movement Disorders Society, serves on the Executive Steering Committee of the NINDS PD Common Data Elements Committee, the Executive Council on the Sections and Subspecialties of the American Academy of Neurology and chairs several clinical trial data monitoring committees. She serves on the Scientific Advisory Boards of The Michael J. Fox Foundation and the National Spasmodic Dysphonia Association. Her honors include the Parkinson’s Disease Foundation Outstanding Woman Researcher (2004), the University of California-Berkeley Alumni Association Award for Excellence in Achievement (2008), and the American Academy of Neurology Movement Disorders Research Award (2012).
Interview is courtesy: The Michael J. Fox Foundation