Nearly 1.5 million Americans are living with Parkinson's disease, a slowly progressing neurodegenerative brain disorder. The disease, which has been linked to a lack of dopamine in the brain, causes symptoms including tremor, slowness of movement, muscle stiffness and balance problems. Since there is currently no cure for Parkinson's disease, most patients focus on working with their physician to find a treatment plan that preserves their quality of life while minimizing the symptoms of the disease. For Paul Ruby, this was not enough.
Ruby set out on a personal journey to help find a cure after being diagnosed with young-onset Parkinson's in 2006. He founded the Paul Ruby Foundation for Parkinson's Research which raises funds to support Northwestern Medicine® researchers who are working to find better treatments, and ultimately a cure at Northwestern's Parkinson's Disease and Movement Disorders Center. The center is the only National Parkinson's Foundation (NPF) Center of Excellence in Illinois and provides innovative, multidisciplinary care, while also conducting research studies to expand knowledge and treatment of movement disorders.
"Being diagnosed with Parkinson's was scary and shocking; it still is to some extent," said Ruby, who lives in Geneva, Ill. "With this foundation, I'm trying to make a positive out of it. It's been very therapeutic for me to be involved with the process of helping to fund research and spreading awareness."
To date, the Paul Ruby Foundation has contributed more than $325,000 to Parkinson's research at Northwestern Memorial Hospital and Northwestern University Feinberg School of Medicine, including a recent gift of $100,000 to fund two research projects in 2012.
"The value of the Paul Ruby Foundation's support is immeasurable," said Tanya Simuni, MD, director of the Parkinson's Disease and Movement Disorders Center, neurologist at Northwestern Memorial and associate professor of neurology at the Feinberg School. "Beyond just the monetary contributions, their work brings a great deal of awareness to Parkinson's. Paul sets a wonderful example of how a person can have this disease, but still thrive and live a very full life."
The Paul Ruby Foundation is an entirely grassroots organization with volunteers serving as staff and on its board. Funds are raised through a variety of events and campaigns, culminating with the annual Concert for a Cure, a large festival in Geneva with live music and family fun. Each year, the foundation's board comes together to listen to research proposals from Parkinson's researchers at Northwestern and then votes on which projects to support.
"In recent years, research has lead to advancements in both diagnosis of Parkinson's and management of its symptoms. However, there's still much to be learned about the disease," said Simuni. "Support from organizations like the Paul Ruby Foundation is important for furthering this research. Studies like those taking place here at Northwestern have the potential to help us better understand Parkinson's which can unlock developments in its treatment and may eventually help find its cure."
It was the actions of Ruby's son which inspired the start of the foundation. "My son, who was 10 at the time of my diagnosis, saw in the newspaper that President Bush had vetoed funding for stem cell research and took it upon himself to write the president a letter," explained Ruby. "He finished the letter by saying 'I just want to be able to play catch with my dad.' I realized that if a 10 year old kid can try to make a difference, I better do the same. It started out as a onetime fundraiser that garnered a great deal of community support. Five years later, we're stronger than ever."
Ruby is optimistic that all his hard work will pay off in the future. "I look forward to the day when we disband this foundation because it's no longer needed; I think finding a cure is definitely on the horizon," said Ruby.
For more information on Parkinson's, visit http://www.parkinsons.northwestern.edu/. To learn more about the Paul Ruby Foundation, visit the http://www.nmh.org/nm/nmfoundation or watch a video with Ruby's story: http://youtu.be/zZGOXSp_Obo.
To find a physician at Northwestern Memorial Hospital, call 312-926-0779.