Today, Penn Egbert knows that his father, George P. Egbert, Jr., had a rare experience with Parkinson’s disease (PD). After experiencing symptoms, he received a correct and swift diagnosis from a movement disorder specialist — Lucian Cote, MD, now retired — at Columbia University Department of Neurology, a Parkinson’s Foundation Center of Excellence. He benefitted from expert care, local resources and had an optimal quality of life for as long as possible.
Penn was a teenager when his father was diagnosed. “Looking back, I realize how fortunate my dad was to be treated at a dedicated movement disorder center, under the care of specialized professionals,” Penn said. “I often think of the people who do not have access to expert care, or a timely diagnosis. People with Parkinson’s face these issues even more often in rural parts of the country and the Parkinson’s Foundation wants to help them.”
To broaden its clinical care network so more people with Parkinson’s receive better quality of care no matter where they live, the Parkinson’s Foundation launched its Reach Further campaign. This four-year fundraising campaign will work to invest an additional $30 million in expanding our reach while advancing research toward a cure and expanding community programs.
As the national co-chair of Reach Further, alongside fellow board member Josh Raskin, Penn wants to help the Foundation further its reach. Our ultimate goal is to find a cure, but until we get to that point there is a big opportunity to focus on patient care and support,” Penn said.
"People can go on for months or even years until they find the right neurologist. Joining the Parkinson’s Foundation opened my eyes,” Penn said. “Not only do we work towards a cure, but we improve the lives of people with Parkinson’s. Reach Further will allow us to make sure everyone in our community has access to better care, programs and resources.”
There are not enough movement disorder specialists in the U.S. “This is one the reasons the Reach Further campaign is so important, one of our campaign goals is to expand our Center of Excellence network, designating more centers to treat more people with PD and bring them a diagnosis sooner,” Penn said.
In 2006, after his father passed away, Penn began volunteering with the Parkinson’s Foundation. “I made a commitment to my dad that I would do everything in my power to try to find a cure for this disease,” Penn said.
Penn has hosted a fundraiser called “Celebrate Spring” every April since 2007. Alongside his sister and fellow board member Josh, the event has raised nearly $1.5 million for the Parkinson’s Foundation. “I am constantly humbled to learn how many friends and attendees are impacted by Parkinson’s. This was a much greater community than I ever realized and Celebrate Spring, along with the Reach Further campaign, provides an essential opportunity for people who are dealing with Parkinson’s to have an outlet to become involved.”
Serving as a Parkinson’s Foundation board member since 2009, has only made Penn more ambitious to create change for the PD community. “We are raising awareness more than ever before, but we are also seeing an increase in people diagnosed with Parkinson’s and we need to expand our reach,” Penn said. “The Parkinson’s Foundation has made so much progress toward reaching the PD community, but there is more to do. Reach Further is the next step to continue to build on all of our resources, programs and research initiatives.”
Penn encourages all those with a loved one new to Parkinson’s to stay hopeful. “Understand that every person’s Parkinson’s is different,” Penn said. “This is a complex disease that anyone can develop. Programs and resources run deep within the Parkinson’s Foundation — make sure you are tapping into them.”