Parkinson’s Women Support (PWS) presented its first symposium for women with Parkinson’s disease, Women & PD: What’s New? on October 29, 2016 in Redwood City to a group of 70 women.
Resa King, a PWS attendee said, “I was truly inspired by the set up committee – women with Parkinson’s setting up tables and chairs. I thought to myself where is the manual labor to assist in the heavy setup? Nowhere to be found, so the ladies pitched in and did it, and what a fantastic job they did! I’m in awe!”
The program began outside on the deck of the Redwood Shores Library Community Room with a warm-up hula session choreographed by Ann Boylan, a Women & PD: What’s New? planning committee member. The backdrop of the waterways of Redwood Shores and the soothing sound of falling water from the nearby water sculpture set an atmosphere of tranquil beauty to start of the day.
Ten doctors, researchers and clinicians explained new procedures, exercises, and applications to help women who have Parkinson’s disease.
Speakers included Dr. Julie Andersen, who discussed her research on Lithium at the Buck Institute. Lisa Garvey, Women & PD: What’s New? planning committee member said, “I appreciated learning about new research from Dr. Andersen. Who knew that a worm might be the key to unlocking future treatments?” [More about this in the upcoming video!]
Dr. Kathleen Poston and her lab manager Taylor Hendershott from Stanford described what is involved in clinical trials.
Dr. Karl Heilbron, 23andMe presented research about women with PD. Nancy Neff, a Women & PD: What’s New? planning committee member recalled, “The room burst into spontaneous applause when Dr. Heilbron said that being invited to the symposium had changed the direction of his research! He is hot on the trail of genetic reasons that PD is more common in men than in women, having first explored hormones and not yet found a reason.”
Barbara Rosenthal, also a committee member concurred, and added, “The highlight was Dr. Heilbron’s declaration that his invitation to present at Women & PD: What’s New? altered his research focus to look at the traits of women with PD. We really need to support 23ndMe’s efforts to gather spit, so that his research base can be expanded.”
Committee member Sarah Eitzman said, “The speakers were great and really responsive. Dr. Heilbron was enthusiastic about questions I had about biological gender differences.”
A panel answered questions from the audience. The panel included Dr. Jill Ostrem and Karen Merchant from UCSF, Randy Hoffman from Palo Alto Speech and Parkinson’s Institute, Dr. Daniel Zwilling, Circuit Therapeutics, Theresa Najjar, Synaptic Physical Therapy, Inc., and Dr. Melanie Brandabur, Ultragenyx. Clearly, the audience wanted more time with the distinguished group!
“I’d like to have heard more from Dr. Zwilling on the progress of his optogenetic research,” lamented Rosenthal, adding “Karen Merchant was very helpful on a one-on-one basis.” She also loved “Theresa’s energy.” Others sang praises for Dr. Ostrem, Randy Hoffman, and Dr. Brandabur. “Randy helped me with an action plan on what to do next with my swallowing issues,” said an attendee. “I just love Dr. B, and I’m so thrilled to meet Dr. Ostrem,” others added.
Elaine Sulzberger, a Women & PD: What’s New? planning committee member observed that a message that was consistent throughout all the talks was the importance of exercise. “We should be working on strength, balance and endurance.”
The audience traveled from all over the greater Bay Area. One mother and daughter drove a total of 6 hours to attend the symposium and were so grateful for the information. The gathering served as an extended outreach to those in outlying communities for whom information is difficult to obtain.
Sulzberger recalled, “A passerby who was not even attending the symposium, and on her way to the library asked for information for a newly diagnosed friend. She was thrilled to receive information from Parkinson’s Women Support.”
Susan Speicher, a committee member responsible for the creation of beautiful pumpkin centerpieces that were donated to Kensington Place, a Memory Care Community noted, “I can’t tell you how proud I am to be a part of such an amazing group of women who, in the face of a life altering diagnosis, choose not to dwell on what is lost, but rather choose to inspire others to live their best life by providing opportunities like the conference today. Wow!”
Women and PD: What’s New? was videotaped, and plans for a web video are underway. The event was made possible by the support of many top organizations.
The event was organized as a tribute to the Women and PD Initiative that Parkinson’s Disease Foundation (PDF) inaugurated in 2015 as the first national coordinated effort to improve the health and well being of women with Parkinson’s disease. PDF was recognized for their trailblazing effort in advancing women’s issues, providing resources, and promoting women’s efforts for Parkinson’s disease.
Medtronic DBS contributed carry bags, snacks and resource materials for Deep Brain Stimulation. Donna Gow, DBS Therapy Sales Specialist, Medtronic Neuromodulation, Northern California was on hand to lend assistance and answer questions. “As a prospective DBS patient, I was glad to get some helpful information from Donna,” said Garvey.
National Parkinson Foundation was acknowledged for their Aware in Care kits and programs for the local community. Colleen Fischer, Community Development Manager, Northern California Market, National Parkinson Foundation helped PWS tremendously, with support and deliveries.
Garvey, a top fundraiser for the National Parkinson Foundation (NFP) Moving Day recalled her most memorable moment. “I was with Colleen at the NPF table when an attendee said that Moving Day actually got her to walk for the first time in years, with her daughter’s encouragement, and she was tearing up, which made us tear up too. It was a really touching moment!”
Boylan said, “The notion behind Parkinson’s Pioneers (a tribute to local researchers and clinicians launched by PWS at Moving Day 2015), is that we as a patient community can help inspire and encourage the scientists and doctors who work on our behalf. This was clearly evident in the way each doctor and specialist was recognized, and seemed to delight in one another’s company.”
Stanford Health Care Neuroscience Supportive Care Program newsletters, and the Stanford Movement Disorders Center Neurology Research Report were hand-delivered for the event by TC Cowles, Program Manager, Neuroscience Supportive Care Program, and Steven Russell, Stanford Parkinson’s Community Outreach Program.
Michael J Fox Foundation sent an enormous box of materials including bright orange squeezy brains, The Fox Focus newsletter, information on Fox Trial Finder, and the latest information on public policy and PD.
At the end of the symposium, Sulzberger inspired by the work of artist Susan O’Malley added a thought-provoking sendoff. Guests were invited to write a post-it note to themselves as though they were 80 years old looking back. The notes were on a board titled “Note to Self.” Boylan said, “The idea of seeing one’s self at “80” is both a nod to Nancy Stohn (an 80-year old PWS member who made it possible for the event to be videotaped) and a promise to the future in which collectively and individually, we will be fine.”
Boylan added, “The symposium demonstrated the power of the many voices and visions united, and that we can muster what it takes to move against a chronic and debilitating disease. It provides a model for not only future conferences, but hopefully for similar meetings in communities farther afield who need the opportunity to come together to inspire and to be inspired.”
Prior to the symposium, PWS received a message from Dr. Michael Okun, distinguished Professor and Chairman of Neurology at University of Florida, and National Parkinson Foundation Medical Director. Dr. Okun, co-author of one of the few clinical studies specifically on women summarized the intent of the symposium beautifully when he noted, “It is clear that there are important differences between women and men who present with Parkinson’s disease. We need to embrace these differences, learn from them, and direct our research efforts to understanding how they may pave the way toward better treatments.”
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
The meeting space is provided as a community service by the City of Redwood City. The City neither sponsors nor endorses this event nor the presenting individual or organizations.