As a child, Kathy Vestuto knew about Parkinson’s disease (PD). She may not have understood the science of it, but she said her “childhood memories are very clear of seeing the progression and expression of the disease” in her grandmother. Her grandmother passed away just as medications such as Levodopa were becoming available to help with symptoms.
It’s one of the motivating factors behind why Kathy joined The Michael J. Fox Foundation staff six and a half years ago. Working in the research department, Kathy laughs when she says she’s no scientist. But she plans events and symposiums about research, working with scientists and associations hosting about 80 meetings each year. When she started, The Foundation's research staff had only six people compared to today’s 30-person research staff. “It’s been an adventure,” she said.
But planning events around Parkinson’s research isn’t all Kathy does. A few years ago, when the Foundation unveiled Fox Trial Finder, an online clinical trials matching tool, Kathy was in on the ground floor. She filled out a profile about herself and some medical history, and the site matched her to two trials she’s participated in so far.
Kathy enjoyed both trials she participated in -- the quality of the staff working with her, the ease of participating, and even had fun. Her first was a cognitive exercise, where Kathy said she basically got to play video games. As a control volunteer, researchers were testing her ability to remember images and objects to later compare to volunteers with PD. The second trial was what Kathy calls a “skin slice” to look at skin stem cells. All she had to do was show up, and let doctors cut a small sample out of her arm for testing.
In both cases, Kathy said she was working with pleasant, well-informed researchers who cared about her and her role in the process. From the questionnaires, to answering questions she had before and during the process, to follow ups just to see how she was, Kathy said she was impressed with everyone. Not only did she call both experiences fun, but she said “it’s important to me personally and in terms of what I do at the Foundation.”
“I think it’s a very exciting thing to be involved in,” Kathy says of trials. “I’m a non-scientist. I can't make a direct impact. I feel like for the most part my contribution is peripheral. If I can do something that will further the goal, I will do that.”
Join the more than 22,000 registered volunteers on Fox Trial Finder by signing up at www.foxtrialfinder.org today.
Kate Harmon is a guest blogger for FoxFeed and profiles members of the PD community who have participated in clinical trials when she's not working as a newspaper editor. Her father has Parkinson's and her entire family is involved in the fight. Check out their family blog for more of these PD warriors, pcrfinc.com.