In the MJFF Winter 2011 newsletter, Robin Katsaros, who runs a caregivers' support group and has volunteered for three Parkinson's disease -related clinical trials, shares her belief in the importance of clinical trial participation -- and her enthusiasm for Fox Trial Finder -- for patients and their loved ones.
Robin Katsaros of Los Altos Hills, California, is swift to take action. Soon after her husband, John, was diagnosed with Parkinson’s disease (PD) in 2008, she formed a caregivers’ support group. “Caregivers’ needs are different from patients’,” she said. “The group has been a terrific resource for all of us.”
She also was quick to understand the importance of participating in clinical research — whether you have PD or not. Living in close proximity to The Parkinson’s Institute & Clinical Center in Sunnyvale, she is currently volunteering in her third clinical trial related to PD.
“When a PD diagnosis first comes into your life, you’re in shock. It’s hard to even think about being in a trial,” Robin said. “But it’s so important to educate yourself about the disease and the critical importance of research. There’s a bottleneck around clinical trial recruitment, and that holds up progress for all of us. The faster we get people into trials, the better the chances for the millions of people living with the disease today.”
When she heard about the launch of Fox Trial Finder (www.foxtrialfinder.org), Robin was instantly enthusiastic about its potential to help increase the number of people volunteering for trials.
“You hope your neurologist is on top of trials in your area,” she said. “But what’s terrific about Fox Trial Finder is that it gives you the power to take action yourself to help speed breakthroughs.”
Now Robin is tapping into her grassroots network to spread the word about clinical trial participation — and Fox Trial Finder — among her support group, local neurologists and family and friends.
“When someone you love has PD, time is of the essence,” she concluded. “For John and for everyone living with this disease, I want to do all I can to help get us closer to a cure. While everyone may think that ‘someone else’ will participate in trials, that ‘someone else’ is us. So I want others to understand that — whether you have PD or not— you can be part of the solution, too.”