An interview with Gary Rafaloff on Advocacy, August 16, 2023 by George Ackerman, Ph.D, J.D.
Accomplished businessman and entrepreneur with over 48 years of professional experience in finance, management, organizational consulting, and business development. Over 25 years as a senior executive on Wall Street, I was President of a regional Securities Broker/Dealer for 11 years, founded numerous private companies and Private Equity partnerships, and have lectured at local universities.
Please tell me a little about your background and what got you involved with awareness.
I was Diagnosed with Parkinson’s Disease in 2012 and now devote much of my time as a consultant, advocate, and ambassador in the Parkinson’s community. My interest is strongly focused on current clinical drug research for new interventional treatments. I work with prominent Foundations, research and fund-raising organizations, and biotech pharmaceutical companies. I have co-authored numerous articles and abstracts on Parkinson’s research which have appeared in well-known journals, publications, and conferences. I am a co-author of the annual review “Parkinson’s Disease Drug Therapies in the Clinical Trial Pipeline”, published in the Journal of Parkinson’s Disease. I’ve lectured, participated on panels, and presented papers all over the world as part of my PD advocacy.
Can you tell me more about your advocacy?
I’ve been involved in many aspects of research for drug development with the goal of finding a Parkinson’s Disease Modifying Therapy (DMT). I’ve served as a member of the steering committee for a drug clinical trial. I currently am a consultant to a biotech company conducting clinical trials for a DMT drug. I am on the steering committee for the “Endpoints Project”, an international committee trying to develop better endpoint measures for clinical trials including biological and digital measures and Patient Reported Outcomes. I am a member of the Michael J. Fox Patient Council. I’ve recently become a member of the international project EJS ACT-PD, with the goal of establishing new trial designs to speed up clinical research and fast-track trials to treatments for PD. I am a co-author of the annual review “Parkinson’s Disease Drug Therapies in the Clinical Trial Pipeline”, published in the Journal of Parkinson’s Disease, which has been the most downloaded article for the journal the past four years and won the 2022 prize for “Best Clinical Research” article of the year.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion as it relates to Parkinson’s is to find a therapy that will slow, halt, reverse or even prevent the disease. I originally became involved as a means for finding a treatment for my disease. Along the way, my advocacy became more altruistic. I hope, and sincerely believe, we will find therapies to slow progression during my lifetime, although I’m not sure they would have much impact on my personal progression at this stage of the disease. My personal goal is to ensure that my children and grandchildren never have to worry about getting Parkinson’s disease.
What type of goals do individuals with Parkinson’s awareness have when working with you?
Most of the advocates that I work with share similar goals as I stated above. We’re not focused on our own cure as much as we are focused on better therapeutics and treatments for our families and the PD community as a whole.
What effect can your advocacy have on an individual with Parkinson’s awareness?
I think the most important things my advocacy provides are (1) Hope; (2) Positive thinking and attitude; and (3) you can live a fulfilled life with PD. My goal is to control my life with PD rather than let PD control my life.
What would you like to see as a future goal for your advocacy?
My goal for the future is to be able to end my advocacy by saying we have found treatments which will modify PD progression by slowing, halting, reversing and even preventing the disease. Simply put, it’s the search for a cure.
What events do you participate in?
I participate in many annual events, such as The Unity Walk; The Annual Therapeutics Conference: Rallying To the Challenge; the International Linked Clinical Trials conference; The triennial World Parkinson’s Congress, and many others by invitation.
How can someone get in touch? What is your website?
By email email@example.com
If you had one final statement or quote you could leave for the Parkinson community, what would it be?
Life is like a rollercoaster with many highs and lows, twists, and turns. Parkinson’s is one of the unexpected lows. However, we can choose how we ride the coaster. I choose to ride it to the top and then scream with joy and laughter. A positive attitude will go a long way to helping you with this journey.