My PD Story
Josh Raskin’s understanding of Parkinson’s disease (PD) has evolved over the last 40 years. He knows that you can live with intrusive symptoms and get misdiagnosed. He knows that his father would have had a better quality of life had he found resources and expert care early on, and he knows that the more he increases his involvement with the Parkinson’s Foundation, the more whole he feels.
Josh’s father, William, most likely lived with Parkinson’s for 20 years before he passed away in 2005. “We think he had it for many years before he was formally diagnosed,” Josh said. “Looking back, I also think my grandfather had Parkinson’s. My uncle is living with Parkinson’s now. This is a disease that is prevalent in my world. It’s personal.”
Josh has made it a point to incorporate Tzedakah in his life (the Hebrew word for charity) by trying to make things a little better for the Parkinson’s community. “I was always looking for an outlet to express the importance of being charitable and I found lots of great causes, but not one that means as much to me as Parkinson’s disease,” Josh said.
Josh has been an important part of the Foundation board for four years. He recently found a new way to make an even greater impact, faster. Josh is now co-chair of the Parkinson’s Foundation Reach Further campaign, alongside fellow Board member Penn Egbert.
The Parkinson’s Foundation launched Reach Further to accelerate progress on Parkinson’s research and increase access to quality of life programs. This four-year fundraising campaign will raise an additional $30 million to expand its reach while advancing research toward a cure.
“This is a big deal,” Josh said. “I think this is going to increase progress on several aspects of the Foundation’s mission. I originally became involved with the Parkinson’s Foundation in search of a cure. With my father and grandfather living with Parkinson’s, you can understand why I would be nervous. I was all about research and finding the cure. Reach Further is a proactive endeavor on all fronts as my focus has evolved.”
Research is just one component on the campaign. “Reach Further will move forward the PD GENEration study and other Foundation grants that aim to find a cure. This is not a moonshot approach, this research going on right now helps us with the building blocks to understand Parkinson’s from the start. This creates outcomes and work that will be leveraged by everyone out there looking for a cure,” Josh said.
For Josh, it was not until he began serving on the Parkinson’s Foundation board that he realized his father’s Parkinson’s experience could have been superiorly different. “My orientation about this disease has changed dramatically,” Josh said. “Today I’m so much more optimistic. There are better treatments and one of the differentiating factors of the Parkinson’s Foundation is that our focus and emphasis is to improve the lives of those living with Parkinson’s now. I feel my father would have had more time, better quality of life and this huge support system in place had we found the Parkinson’s Foundation before he was diagnosed.”
The synchronization of research and care is what drew Josh to co-chair the $30 million campaign. “When we raise these funds, we are going to be able to increase the number of our Centers of Excellence and increase access to care to local communities,” Josh said. “We are going to be able to help a much bigger percentage of people with Parkinson’s. This campaign will keep us on the right path for Parkinson’s Foundation research breakthroughs.”
Josh and his wife, Melissa, work alongside Penn, the Reach Further co-chair, to co-host the Celebrate Spring New York fundraiser. The annual event has raised a total of nearly $1.5 million since 2007. “This event was a way to give back, raise awareness and get your friends involved. The more I worked alongside the Foundation, the more impressed I was. When I was asked to join the board, I was excited to make a difference in something I felt so passionate about.”
For Josh, it took many years of knowing Parkinson’s before he found a large-scale way to make lives better for people with Parkinson’s. His advice to anyone looking to get involved is simple, “Do it now, reach out to us,” Josh said. “We need all the help we can get. Everyone at the Foundation is extremely knowledgeable and will help you find a way to get involved.”
Help Us Reach Further. Donate and check our campaign progress at Parkinson.org/Reach or call us at 1-800-4PD-INFO (473-4636).
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