If you’re thinking of starting your own women’s support group, you may want to chat with some of the women’s group representatives who will attend The World Parkinson Congress (WPC) on September 20-23. Each one of them has experience in community-building for women who have Parkinson’s disease. They plan to meet at WPC at a time and location to be announced, and they would be delighted to share their experiences about building women’s support groups with WPC attendees.
Some representatives planning to attend WPC include:
Representing the Los Angeles area, Inspired Women with Parkinson’s in Los Angeles is a group organized by Sharon Krischer. Krischer started a blog, Twitchy Woman: My Adventures with Parkinson’s Disease to encourage the exchange of ideas and solutions with others living with Parkinson’s. The support group was a natural next step after Sharon attended the Women & Parkinson’s Initiative conference sponsored by the Parkinson’s Disease Foundation (PDF). The group has been meeting since January at various locations around Los Angeles. Activities have ranged from a PDF Advocate speaking about clinical trials, a Boxing for PD demo, Dancing through Parkinson’s, a Yoga session specifically for women with Parkinson’s and more.
“Our programs tend to be experiential with activities that involve everyone who attends, in addition to the sharing of ideas and problem solving,” said Krischer. “Most importantly, it provides a place for women with Parkinson’s in the Los Angeles area to meet other women with Parkinson’s in a non-threatening environment.”
Parkinson’s Women Support (PWS) in Silicon Valley, Northern California is represented by Susan Foster, RN, BSN and Darcy Blake. Their mission is to offer moral support, encouragement, and camaraderie for women who are living with Parkinson’s disease. The group’s focus is on living life as fully as possible with PD.
PWS meets for lunch once a month, keeping the faith in one another and forming fast friendships. “As the lunch table and community have grown, our commitment to one another holds steadfast,” said Foster, one of the co-chairpersons of the PDF Women and Parkinson’s Initiative. “We’ve recently spawned another group in central California, and we hope to grow more groups regionally.”
The Philadelphia Area Support Group for Women with Parkinson’s is represented by Lori Katz, a retired educator who, five years ago, founded the Delaware Valley’s first all-women’s PD support group, focusing on women’s needs, also offering professional presentations, and serving as a forum for women in the PD community. The group has fostered close friendships and informal support networks as well as serving as a resource for providing current information about treatment and research. Lori is founder and chairperson of the Patient Advisory Council of the Pennsylvania Hospital Parkinson’s Disease and Movement Disorder Center. She helped establish a Dance for PD program in southern New Jersey and has been a Research Advocate for PDF for nearly five years. Lori was one of the co-chairpersons of the PDF Women and Parkinson’s Initiative.
Dr. Maria De Leon represents East Texas. She is a retired movement disorders specialist, motivational speaker, and a person living with Parkinson’s disease. Dr. De Leon has guided PDF’s work to address unmet needs, including women’s issues and formation for the Spanish-speaking community. She recently published a book, Parkinson’s Diva: A Woman’s Guide to Parkinson’s Disease. She runs the defeatparkinsons organization whose aim is to counsel individuals and families living with Parkinson’s disease. Maria also has two blogs http://www.defeatparkinsons.com which is aimed at educating and helping people live better lives with their illness and http://www.ParkinsonsDiva.org which is partly an extension of her book on women’s issues and her personal life struggles and victories with PD.
About Parkinson’s Women Support: The mission of Parkinson’s Women Support is to offer moral support, encouragement and camaraderie for women who are Parkinson’s disease patients. Check out our Facebook page: https://www.facebook.com/parkinsonswomen