eNewsletter August 2004
How the Walk was started, by co-founder Kenneth Aidekman
When Margot Zobel, the Founder of the Parkinson’s Unity Walk, learned she had Parkinson’s disease (PD) she did something obvious, but perhaps a bit unusual: she found the first listing under Parkinson’s in the Manhattan telephone directory and called the Parkinson’s Disease Foundation (PDF) at Columbia Presbyterian Medical Center. Dinah Tottenham Orr, the executive director at the time, suggested to Margot that she attend a local support group meeting and within a few years she became the group’s leader.
Margot was never shy about taking on important projects. In the 1970’s she became aware that her daughter had unique educational needs so she started a school to help her and others like her. If there was a cause she felt strongly about she helped out. She participated in the New York AIDS Walk from its beginning. After a number of years of living with Parkinson’s, she reasoned that if she could walk for AIDS she could walk to cure the disease that afflicted her.
Finding no Walk for Parkinson’s in New York City, Margot appealed to the members of her support group to get one started in her neighborhood close to Central Park. As much as they liked the idea, many of her fellow PWPs (People with Parkinson’s) was expending most of their energy just getting by on a day-to-day basis. They didn’t believe they had the strength or drive to get involved. At one particular point of frustration a friend with Parkinson’s gave Margot the encouragement she desperately needed. Fred Ziess listened to her tale of woe and said, “I’ll walk with you. Then, even if nobody else shows up, at least we’ll enjoy a nice walk in the park.”
Guaranteed at least two walkers, Margot made countless telephone calls to city agencies and police precincts. She emerged with the necessary approvals and papers to hold a two-mile walk from West 96th Street, down Central Park West and ending at Columbus Circle. She decided the distance should be shorter than for other fundraising walks because PWPs with difficulty walking should still be able to participate in their own event.
In June of 1994 Margot attended the first Parkinson’s Action Network Public Advocacy Forum in Washington, D.C. This is where I met Margot (my father and grandfather had suffered with PD). I immediately embraced the concept of the Walk as an opportunity to not only raise money, but to build a much needed “community” in the New York metropolitan area.
At the time there was little public awareness about PD. Joan Samuelson of the Parkinson’s Action Network (PAN) introduced a rallying cry: “Invisible No More”. The message was one of empowerment for PWPs who now sensed that they might actually improve the outlook for their future health by asserting themselves and educating others about PD.
Inspired by that first PAN Forum, Margot began to convene regular planning meetings for the Walk at local committee members’ apartments. Organizing a fundraising event was difficult and time consuming for a single woman with Parkinson’s living alone. While she was volunteering her time, Margot still had to make a living as a computer consultant. The workload was tough but she managed to keep it up.
From the onset this Walk was different. It was planned and administered by PWPs and their families. They decided the proceeds from the Walk should be earmarked for research by top scientists chosen by the major national Parkinson’s organizations.
On a chilly October day in 1994, 200 people arrived at the West 96th Street entrance to Central Park for the first “Parkinson’s Walk Along the Park”. The committee had grown to include Marty and Anita Suchoff, Fred Ziess, Barbara Ehrlich, Dale and Judy Waldkirch and Don Freel. I brought t-shirts, banners, relatives and the family dog. Dinah Orr brought her friends from PDF, including its chairman Dr. Bud Rowland. Dr. Enrico Fazzini and Jim Maurer also spoke representing American Parkinson Disease Association.
It wasn’t the AIDS Walk in terms of size or dollars, but considering where we started it was quite a successful beginning. The committee members didn’t wait long before they started work on improving the next year’s event. Each volunteer took on more responsibility as his or her enthusiasm grew. Our goals and policies became increasingly clear. We would stand for fostering unity among those affected by Parkinson’s. All funds collected would go to research approved by the scientific boards of the endorsing Parkinson’s organizations. Expenses were to be entirely funded through sponsorship dollars so that every dollar raised would go to research.
So with the success of the 1995 Walk in Riverside Park we came to the realization that it was time to officially change the name to the “Parkinson’s Unity Walk”, making “Unity” our middle name. Our mission was, and still is, to Fund the Research - Find the Cure so we can put an end to PD forever.
Margot serves as a consultant and a member of the board of directors. Go to Margot’s Corner for her monthly column at http://www.unitywalk.org/margot.shtml.
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Top 20 Teams and the Top 20 individual fundraisers
CONGRATULATIONS to all the Parkinson’s Unity Walk participants for setting your goals and raising donations. Because of the hard work and dedication by everyone the 2004 Parkinson's Unity Walk set a new one-year record raising over $900,000 for Parkinson's Research!
The top 20 teams raised the bar this year by INCREASING DONATION totals by 42% over last year. Way to go!
The Top 20 Teams are:
Betty’s Bunch…$37,225.00
Team YOPA…$33,371.20
Team Cantore…$26,154.00
Team Ettleman…$17,670.00
Al’s Pals…$16,068.00
Flossie’s “Faithful” Fan Club…$15,879.00
MALAJA8…$11,254.00
Priceless…$9,976.80
Gulf Coast Parkies…$9,405.00
Light of Day…$8,838.00
Team NPF-YOPN…$8,580.00
Bucherer’s Buddies…$8,460.00
Team Rhode Island…$8,270.00
The Turtle Gang…$8,265.00
“Murray’s Fidgety Feet”…$8,225.75
Team Connie…$7,700.00
Miracle Marvins…$7,505.00
Minnie’s Marchers…$6,980.00
Team HARRY…$6,415.00
PLWP…$6,168.00
The 20 individual fundraisers:
Lisa Caltabiano…$26,625.00
Brian Suchoff…$24,686.00
Randi Jacobs…$20,631.00
Gayle Maloney…$15,429.00
Donna Kos…$12,511.81
Tamra Cantore…$11,877.00
Sheila Sataloff…$11,004.00
Ben Ettleman…$10,250.00
Matthew DePace…$10,000.00
Geaton & Joann Decesaris…$10,000.00
Katharine Crawford…$9,650.00
Dan Kiefer…$7,911.00
Rebecca Hunter…$7,320.00
Ryan Sanzari…$6,703.00
Domenica Diadema…$6,530.00
Alan Klavans…$5,497.00
Robert Belisle…$5,393.33
Lauren Kroll…$5,381.00
Janet Weinberg…$5,234.00
Kenneth Aidekman…$5,200.00
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A Tale of Two Walks: 2003 and 2004
Our first trip to a Unity Walk was a memorable one. The five of us were traveling on the Pennsylvania Turnpike to the Trenton train station, when our SUV was literally rocked as another vehicle sideswiped us. We were delayed an hour as the state trooper completed the accident reports. When we were at last free to go, we voted unanimously to continue to New York. We met my brother and his wife in Trenton, and another friend in Central Park. The eight of us completed the Walk in the rain, but our spirits remained high through the day.
This year’s travel to the Walk was, thankfully, uneventful. We had twenty-one members of “Team Gorman” walk in perfect weather, and raise more than twice the amount from the previous year.
I suppose a lesson can be learned from two very different trips that had the same goal.
Coping with Parkinson’s disease can mean expanding our own definitions of “sunny” days and narrowing our definition of “rainy” days. If we keep those meanings in mind, our lives should be a little bit easier.
Tom Gorman: tgorman@icdc.com
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Spread the word without a computer...
Should you decide to fundraise by mail, letters can be written in a personal way to get the word out about Parkinson's disease and the Parkinson's Unity Walk. You can mail the letter to your email friends as well. It can't hurt and serves as a visual reminder. This works best if you include a self-addressed envelope in with your letter.
Using colored envelopes for your return envelope may give you an added feeling of excitement, because when you open your mail box and see those bright envelopes standing out, it's a good feeling!
How do I write an "asking letter"?
The Asking Letter is your primary tool to reach out to your giving audience; the letter needs to reach both the mind and the heart of the reader.
If people send checks directly to you, you should forward them to The Parkinson's Unity Walk:
633 Third Avenue, 27th Floor
New York, NY 10017
Be sure to include a note with your name specifying that the enclosed checks are in support of your fundraising efforts as an individual and/or Team. You will need to manually add any "off-line" donations you receive onto your personal web page. http://www.unitywalk.org/newwalk.html
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By volunteering you will have the satisfaction that you were able to help others and be involved with a successful event that raises funds for Parkinson’s disease research.
The Walk has volunteer opportunities available. You may be thinking how do I get involved? We have answered some questions below that will help associate you with the possibilities of volunteering for a great cause.
What can I do?
There are always positions available in all areas and you can be sure of a warm welcome from all the volunteers no matter what you do. We will ask you questions to help place you in a position and provide you with a detailed job description. The areas include: registration, t-shirt distribution, refreshment distribution, marshal service, welcome committee, set-up, and dismantling, among others.
How much time do I have to give?
Generally, we only look for volunteers to help on the day of the Walk. But sometimes this changes and we need volunteers to help prior to the event. We are always seeking volunteers to help get the word out by distributing Walk brochures within their community.
What skills do I need?
A willingness to smile and help others on the day of the event is the two essential qualifications.
Should you wish to volunteer please click on http://www.unitywalk.org/newwalk.html, look for the volunteer link and fill out the application or call Trina Stokes at 866-789-9255 to get more information.