Making a Difference through Parkinson’s Education, Advocacy and Clinical Trials

Steven DeWitte is being honored as a Champion of Change in the Fight Against Parkinson's Disease.

It was March 5, 2005, I heard the chilling words, “I’m relatively certain you have Parkinson’s disease.” I was totally ignorant of the implications, and if not for the solemn delivery, I would not have viewed this news as serious. I slowly began my self-education, initially through Google and chat rooms.

Serious education began at the inaugural World Parkinson’s Congress, which revealed how the disease progresses over time, and exposed me to great people who deserved a better quality of life. I was inspired by fellow People with Parkinson’s (PWP) such as Robledo and Issacs. They showed me that patient advocates could have a broad reach and encouraged my drive for positive change.            

I started my first support group in October 2006 with eight attendees. The group’s reputation grew, leading to the founding of the Connecticut Advocates for Parkinson's Inc. With names like Hespelers, Baldwins, Pelchat, and Johnson, it has evolved into a collaboration of three State Advocacy Groups named the Make a Difference Parkinson’s Alliance (MADPA), which serves over 300 PWP.

With this foundation, we began to understand and seek opportunities to make a difference, through education, advocacy, and participation in clinical trials:

Education: Patients need to understand the progressive nature of the disease and stay current with treatment options. Sharing their knowledge with others helps the Parkinson community to assess treatments effectiveness and it encourages others to “make a difference.”

Advocacy: There is no stronger influence for change, than sharing patient experiences with elected officials who can drive change through research funding and the appropriate support for regulatory authorities.                                                    

Participating in Clinical Trials: It takes over fifteen years and at least $1 billion to bring a symptom-relieving drug to market. Clinical trials are a vital step in this process and require a sufficient number of patients in to the various stages of the clinical trials. Accelerating the recruitment and enrollment of volunteers can have a direct impact on the time and cost to develop advance treatments for Parkinson’s disease.

I discovered two major obstacles to participation in clinical trials was access and fear. PWP were more willing to participate in Clinical Trials than the statistics represented, so I built a database of patients who would participate in trials if transportation were provided. Registrants increased, when they knew others would accompany them, thus eliminating some of the fears. From this, the Clinical Trial Transportation Program (CTTP) was created.  

The Program demonstrated its effectiveness in several ways:

• The Program provides a list of pre-screened volunteers that dramatically reduces overall recruitment time.
• Trial results were accelerated, thus speeding data that can be used toward treatment-based research.
• The trial pool attributable to the CTTP lived over 100 miles from the Research Center. Volunteers through the CTTP are a new demographic for most studies.
• By reducing the time it takes to gather the data, there can be cost savings.

Since the program’s first trip to Boston with seven people on July 15, 2011, it has now logged over 100 patient visits at such institutions as Columbia Medical Center, Beth Israel Deaconess, and Weill Cornell.

This journey has brought me many good friends, which has increased my urgency to beat this disease. Through it, we have learned that patients of any disease can be empowered to make a difference, and are important partners in the development of disease modifying treatments.

I am truly humbled to be recognized as a White House Champion for Change, but share this honor with the many before me, and those currently, who are “making a difference” towards finding a cure for Parkinson’s.

Steven DeWitte is the founder and co-chairman for the Connecticut Advocates for Parkinson’s (CAP) and its affiliate organization, the Make A Difference Parkinson’s Alliance (MADPA)