Meet the Advocates
The cornerstone of the PAIR program is a national network of more than 200 Research Advocates from 42 states who are actively changing how research is done by:
Hernando Pharmacist to PAIR Up with FDA
PDF Research Advocate Richard Hoffmann, Pharm. D., of Hernando, FL, is bringing his personal passion for Parkinson's research and his professional expertise to a new role as a consumer representative on a committee of the US Food and Drug Administration. In his role on the Peripheral and Central Nervous System Drugs Advisory Committee, Dr. Hoffmann evaluates potential new drugs to treat the neurological disorders that affect millions of people, including his wife Margaret. He said,"I understand all too well from our family's experience the need for better treatments for neurological diseases. My goal is to be a protector of the consumer and the liaison for people who live with neurological diseases such as Parkinson's disease. I will represent their viewpoint and their urgency, while ensuring that potential new drugs being reviewed are not only effective, but safe."
Getting Volunteers Where They Need To Go
Steve DeWitte of New Preston, CT, is helping to overcome a seemingly simple barrier — getting volunteers to the research studies that interest them. As he told PDF, “When I ask people with Parkinson’s why they are not involved in research studies, many reply, ‘Because I have no transportation.’” His solution was launching the Clinical Trial Transportation Program (CTTP). By partnering with Beth Israel Deaconess Medical Center in Boston, MA, CTTP has helped 26 volunteers to participate in research studies by transporting them by van from Connecticut to Boston. His initiative has inspired fellow PDF Research Advocates Gordie Guist and Cam Weaver, to expand the program to Maine.
Bernie Brings The Latest to South Carolina Groups
PDF Research Advocate Bernie Snead of Myrtle Beach, SC, believes that one of the simplest ways to advance research is to let the community know what they can do to help. And one key place for sharing the information is support groups. In collaboration with the Parkinson Association of the Carolinas, Mr. Snead aims to bring the latest information to 46 support groups in North and South Carolina. To date, he has reached 13 of them. He interweaves PDF’s Getting Involved in Parkinson’s Research presentation with his own personal experiences in volunteering for trials. He tells groups about the studies that are taking place in their communities, and suggests questions that people should ask when they are thinking about volunteering. Following his presentations, the number of support group members who stated that they are likely to participate in a clinical trial increased by 50 percent!