After years of research into a cure for Parkinson's disease, volunteers now are being sought to continue the next step.
"We made a shift from just focusing on fundraising to focusing on patient outreach and clinical trials," said Kara Lohse, advancement officer for the Michael J. Fox organization. "It's a huge initiative."
Lohse spoke to residents at the Elmcroft Senior Living Center in Williamsport, to raise interest in finding volunteers by using the Fox Trial finder website, which matches people to trials based on certain qualifications.
"It's like match.com for patients and clinical trials," Lohse said. "It's the exact same algorithm. The patients put in information, whether (they're) diagnosed, a simple medical history background, not too elaborate, zip code or location and it generates a list. ... It makes it really easy for them to see what's available for them to join a clinical trial."
About 80 percent of clinical trials finish late because not enough volunteers can be found. About 30 percent never recruit a single subject. To combat that, she and others have been traveling the country to generate interest of volunteerism among patients.
"Without people participating in clinical studies, nothing would get done," she said. "We really need patients to test new therapies. Otherwise, we won't get where we want to get, which is ultimately a cure."
There are three phases of a clinical trial. In the first stage, it has to be made safe for humans. In the second stage, between 50 to 100 people test it for efficiency. In the final stage, thousands of people participate.
Every trial is different. Some could take a few years and some could take a few weeks.
What makes finding a cure so difficult is the lack of a biomarker, which is a measuring tool that indicates the disease's presence. Without the biomarker, there is no way to track the disease's progress.
"Therapy can take up to two years," Lohse said. "If we could find a biomarker, we could get it down to six months."
Science and drug development can be very slow. It can take up to 10 to 20 years to develop a drug and cost about $1 billion, she said.
Lohse and others in her position at the Fox Foundation talk about the clinical trials but they also promote awareness about the disease.
"A lot more people are getting diagnosed with Parkinson's disease, unfortunately," she said.
Since the foundation is the largest private funder of Parkinson's research, Lohse said there are a lot of things happening that those with the disease would want to know about.
Lohse made the trip from her office in New York to Lycoming County because Gail Brungart, who has the disease, is part of the grassroots fundraising branch of the Michael J. Fox Foundation known as Team Fox.
Brungart asked Lohse to come down as part of the foundation's initiative to talk in front of people.
Since Fox Trial Finder went live last month, 6,000 volunteers created profiles. Lohse has a goal of 10,000 profiles by the end of the year.
"Us getting on the ground and being in front of people is working," she said. "People are paying attention."
For more information, visit foxtrialfinder.org.
