The Parkinson’s Foundation held its first Women and PD Conference in 2015. This three-day gathering of female community leaders living with Parkinson’s disease (PD) gave participants the information, tools and leadership skills they needed to advocate for the specific needs of women with PD.
The conference planning committee and faculty included:
Parkinson’s Foundation Research Advocate, founder of Pennsylvania's first all-women's Parkinson’s disease (PD) support group, Cherry Hill, N.J.
Susan Foster, R.N., B.S.N., M.A.
Parkinson’s Foundation Research Advocate, professional with 25 years of experience in clinical research, training and marketing in the pharmaceutical industry, Sunnyvale, Calif.
Parkinson’s Foundation Research Advocate, award-winning poet, feminist activist, best-selling author of more than 20 books, New York, N.Y.
Vice Chair, Parkinson’s Foundation People with Parkinson's Advisory Council, former quality control specialist, Bristol-Myers Squibb biopharmaceutical company, Evansville, Ind.
Our faculty included female specialists in a variety of disciplines, including movement disorders, psychology, physical therapy, self-care and others.
- Roseanne D. Dobkin, Ph.D.
Associate Professor of Psychiatry, Robert Wood Johnson Medical School, Rutgers University, New Brunswick, N.J.
- Becky G. Farley, P.T., M.S., Ph.D.
Chief Executive Officer, Founder, Parkinson’s Wellness Recovery (PWR!), Tucson, Ariz.
- Rebecca Gilbert, M.D., Ph.D.
Associate Professor of Neurology, Parkinson’s and Movement Disorders Center, NYU School of Medicine, New York, N.Y.
- Sheila Silver, M.A., D.H.S., A.C.S.
Clinical Sexologist, Portland, Ore.
- Alison Willis, M.D., M.S.
Assistant Professor of Neurology, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pa.
Conference attendees were asked to share their knowledge (by organizing at least one Women and PD event or a series of events, in their own community) to help other women live well and better manage their symptoms and to advocate for the needs of women with Parkinson's.
Since the conference, Women and PD Advocates have organized:
- State-wide and local conferences
- Keynote speaking appearances
- Break-out sessions
- Focus groups
- Support groups
- Book clubs
And have been featured in:
- Neurology Now: Unconventional Wisdom: A patient organization challenges long-held assumptions about women and Parkinson's disease.
- Women’s Media Center: Maria De Leon, Susan Foster, Allison Willis
- Self.com: What It's Like to be Young, Female, and Living with Parkinson's Disease
In 2015, 25 women joined the Parkinson’s Foundation at the launch of our Women and PD Initiative. Hear from these inspiring women, all of whom live with Parkinson’s disease (PD), about their experiences:
“The 25 attendees at Parkinson’s Foundation’s Women & PD Conference are a remarkable bunch. The experience for each attendee was like putting together a beautiful puzzle to be able to finally connect people with their stories. Each of us has vowed to do something for women with PD in our community. Robin Morgan (who helped to launch the initiative) says she likes the Parkinson’s Foundation because they’re all about empowering the patient and I would have to agree. The Parkinson’s Foundation plus 25 women means magic!”
— Darcy Blake, Redwood City, California
Read More in Darcy’s Blog Parkinson’s Women Support
“Although they came from all walks of life, each woman at the Parkinson’s Foundation Women and PD Initiative, had in her own way, already taken the bricks that were thrown at her by this progressive incurable neurological illness and decided to make a fort for herself and others. Rather than focus on the broken pieces, we have all chosen to focus on what it is we can STILL do with those broken pieces and to rewrite our own story. Let our work help other Parkinson’s women around the globe find their own strength and summon their inner diva to rewrite their own stories as well!”
— Maria De Leon, M.D., Nacogdoches, Texas
Read More on Maria’s Blog Parkinson’s Diva
“After returning home from the Parkinson’s Foundation Women and PD conference, I remain on a high. We are all taking skills from our ‘former lives’ and using them to reach out to other women who also have PD. The most important thing we learned is how to be proactive about how we let Parkinson’s control our lives. We threw out the words, 'perfect, should and normal' from our vocabularies. We learned about the psychological effects of Parkinson’s and the benefits of exercise. I am truly honored to be part of this distinguished group of women.”
— Sharon Krischer, M.S., M.A., Beverly Hills, California
Read More on Sharon’s Blog Twitchy Woman
Interested in participating in the Women and PD Initiative? Email the Parkinson’s Foundation at firstname.lastname@example.org.