Posts Tagged support groups

MJFF Comes to Town: Sharing the Latest in Parkinson’s Research with Support Groups

Posted by on Monday, 2 January, 2012

The Michael J. Fox Foundation (MJFF) has stepped up efforts to connect locally with the Parkinson’s community, and with support groups in particular. “It’s an opportunity for patients to hear about the latest news in Parkinson’s research and for us to learn from patients,” said Seanna Bruno, associate director of advancement, who frequently updates support groups on Parkinson’s drug development and the Foundation’s strategy to speed a cure.

Groups have the opportunity to learn about recent research breakthroughs toward better treatments for Parkinson’s and the Foundation’s research programs — as well as how individuals and communities can help speed a cure by signing up for Fox Trial Finder and participating in clinical trials, or by supporting local Team Fox events.

Many patients travel miles to attend. “It gives them a sense of hope knowing that someone is really doing something on their behalf — to help us get to a cure, and sooner,” said Eden Feldman, director of outreach at the University of South Florida Parkinson’s Disease and Movement Disorders Clinic in Tampa, who recently invited Seanna to address six local groups. “It’s a big deal to hear directly from MJFF.”

If your patient or caregiver support group is interested in hosting a presentation by a Foundation representative, please contact Kara Lohse at (212) 509-0995 ext. 283 or klohse@michaeljfox.org.

Robin Katsaros: “You Can Be Part of the Solution”

Posted by on Friday, 9 December, 2011

In the MJFF Winter 2011 newsletter, Robin Katsaros, who runs a caregivers’ support group and has volunteered for three PD-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.

John and Robin Katsaros, with sons Christopher and Matthew

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. Continue reading “Robin Katsaros: “You Can Be Part of the Solution”” »