David Higgins’ personal and professional experiences drove him to start advocating for the Parkinson’s community nationally, but he says the Parkinson’s Action Network’s resources and training has helped him and others in California increase their visibility on state policy issues as well.
In fact, David, assistant state director and Sarah King, PAN’s Southern California State Director, were integral in the organization of the first California Parkinson’s Advocacy Summit this past March. Using PAN’s work on a model, the California leadership team brought together people living with Parkinson’s, local organizations, researchers, and clinicians to discuss opportunities to engage in advocacy within the state of California. Topics of discussion included Parkinson’s research funding in California, research on environmental risk factors for Parkinson’s, the California Parkinson’s Disease Registry, and the expansion of telehealth within the state.
David first heard of Parkinson’s disease when he was a young boy. His grandmother had the disease long before there were effective therapies to help. In 2008, his mother was diagnosed with Lewy Body Dementia, a disease similar to Parkinson’s disease. Then in 2011, David was diagnosed with Parkinson’s disease. When he first felt symptoms, he said, like many people, he was in denial.
In addition to these very personal connections with Parkinson’s, David is a trained molecular biologist and geneticist and has worked on the development of Parkinson’s drugs.
After his diagnosis in December 2011, he attended his first PAN Forum in February 2012. His neurologist had recommended that he reach out to the Parkinson’s Association of San Diego for more information and it was through that organization that he first heard about PAN. David said the first Forum was very gratifying.
“It was unbelievable,” David said about his experience at PAN’s Forum. “I have never been in a room of 300 people who had Parkinson’s. [The attendees included] people of all skill levels.”
He said he was also impressed by PAN’s staff. “They were the most incredibly reaffirming group of people I had ever been around,” he said.
Since that Forum, David has taken on volunteer leadership roles at PAN and with the Parkinson’s Association. He currently serves as the vice president of the Parkinson’s Association’s board and helps run their support group, where he keeps the local Parkinson’s community up to date on PAN issues.
David said he often speaks with people in California who believe that they are disconnected from what happens in Washington, DC, and that the federal policy issues may not really impact their lives. He uses his personal story to explain why that’s not true.
“In the case of [federal research] funding, this is a matter of life and death for me,” he said he tells people. “It’s not an abstract policy. This is my life.”
As a scientist, he also explains to people just how damaging it is to science and to the future of medical innovation for funding cuts to take place in research funding.
“Once you stop funding a body of science, the repercussions will last generations,” he said. “We are not making basic progress and we’re not training the next generation of scientists to take care of us in our old age.”