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Around and About the Community
Margo Zobel, photo courtesty of the Parkinson's Unity Walk
The Parkinson’s Disease Foundation (PDF) mourns the loss of a dear friend and passionate advocate, Margot Zobel. Ms. Zobel, founder of the Parkinson’s Unity Walk, the nation’s largest fundraising event for Parkinson’s disease research, passed away on January 29 in New York City.
In the early 1990s, nearly ten years after her own Parkinson’s diagnosis, Ms. Zobel wondered why there were walks for so many other causes, but not for Parkinson’s.
She posed the idea for a walk to her PD support group and others, but was greeted by a typical retort: “Parkinson’s patients don’t walk!” Surprised but not discouraged, she decided to start a walk herself, “whether two people or 200” showed up.
At the first walk in 1994, 200 people turned out to walk a mile in Riverside Park, and the event raised $16,000. By 2009, the Unity Walk — relocated to Central Park — drew a crowd of more than 10,000 and raised more than $1.5 million!
Lewis P. Rowland, M.D., President of PDF, noted, “The Parkinson’s Disease Foundation joins the Parkinson’s community in expressing sorrow for the loss of Margot’s vigorous voice and her magnanimous leadership on behalf of people with Parkinson’s. But we also celebrate her life and the wonderful legacy she has left to the Parkinson’s community.”
Ms. Zobel is survived by her daughter, Vida Fitzgerald.
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Clinical Research Advocate Works Hard to Raise Awareness in Michigan
Carolyn Weaver, of Freeland, Michigan, is taking her state by storm with outreach and education about Parkinson’s disease (PD) clinical research. Ms. Weaver is a 2008 graduate of Parkinson’s Disease Foundation (PDF) annual Clinical Research Learning Institute, which educates participants about the ways in which people living with PD can contribute to the development of new treatments for PD and perhaps even hasten its cure.
After her 2008 training, Ms. Weaver pitched a new initiative to the Michigan Parkinson Foundation (MPF), a group that serves the Michigan PD community. Her proposal: she would travel around the state, bringing a clinical research presentation to all 50 of MPF’s support groups.
To date, she has visited 10 of them, including the young-onset support group for which she serves as co-facilitator. Ms. Weaver uses a PowerPoint presentation developed by PDF that is used by all 65 graduates in communities around the US. This presentation covers the basics of clinical research, resources for people to find studies in their area (such as www.PDtrials.org) and tips for making informed decisions about research participation. She has also separately met with MPF’s support group facilitators, so they can independently educate their own groups.
Ms. Weaver has found that her audiences become particularly engaged when she talks about her own participation in five studies. As she says, “People seem to just be soaking it up like a sponge! Not everyone has access to this information.”
After her presentations, she often goes above and beyond the call of duty, finding potential clinical studies for the people she meets and providing personalized guidance on how they can make informed decisions about participating in trials.
In recognition of her hard work, MPF asked Ms. Weaver to serve on its state board of directors. As MPF CEO, Debby Orloff says, “Carolyn has made such an impact on our groups — letting our members know about the importance of clinical research participation and the resources available to them. It is incredible to see what she has accomplished in one year in educating people about research. We look forward to working with her in 2010!”
Ms. Weaver continues to take her show on the road around Michigan, and is partnering with 2009 graduate Gerald Van Wambeke, J.D., of Ann Arbor, to find new ways to increase awareness of clinical trial participation around their state.
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To learn more about clinical trials, visit www.PDtrials.org/ or call (800) 457-6676. For more information about PDF’s Learning Institute, visit www.pdf.org/en/crli. To get in touch with the Michigan Parkinson Foundation, call (800) 852-9781 or visit www.parkinsonsmi.org.
Have you been involved in fundraising or awareness-raising work for Parkinson’s disease (PD) or have you run a program designed to empower your community? If so, then your activity could be displayed on a poster for all to see at the 2nd World Parkinson Congress (WPC 2010) in Glasgow, Scotland!
WPC 2010, scheduled for Tuesday, September 28 to Friday, October 1, will bring together people from all reaches of the PD community for a high-level inspirational meeting on Parkinson’s. In addition to live educational sessions about PD, the WPC will offer a scientific poster session, during which scientists will answer questions summarizing their own Parkinson’s research. Alongside this scientific exhibit will be a poster session for the lay community, entitled “Living with PD.” It will include posters detailing efforts undertaken by people with Parkinson’s disease, caregivers and voluntary organizations around the world to further the cause.
WPC 2010 invites people with PD, support groups, pd organizations and other non-medical contributors to submit their programs for this poster session. The only requirement is that the program make a positive difference to people living with PD. If your poster is accepted, the WPC will ask that you or one person from your organization attends the meeting to present it (unfortunately, expenses cannot be covered by the WPC). Submit online at www.worldPDcongress.org by Monday, April 12, 2010.
For those who will be in Glasgow for the event, the WPC 2010 has announced additional programs such as a Renewal Room (featuring Yoga, Pilates and art) and early bird registration prices, which will be available through Wednesday, June 30, 2010. To register, visit www.worldPDcongress.org or call (800) 457-6676.
PDF is a leading supporter of the WPC, joining 125 organizational partners from 38 countries.