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Walking The Walk

By Lisa Germinsky | Wednesday, April 29, 2009 9:00 AM ET

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Unity Walk treesTonic’s Parkinson’s Awareness month coverage culminated last Saturday at the Parkinson’s Unity Walk (PAW) in New York City’s Central Park. Now in its 15th year, the grassroots event rallies over 10,000 men and women from all over the United States in the fight for a cure. This year’s efforts raised an astonishing $1,216,320 for the major U.S. Parkinson's research organizations. 

As I approach the bandshell, it becomes clear to me that no one here today is going down without a fight -- this disease has touched so many lives. I’m moved by the community’s palpable enthusiasm and impressed by the love and care evidenced in the homemade signs and personalized team shirts.   

Patti Lightner, Quaker Queen

Patti LightnerI immediately have the good fortune of meeting Patti Lightner, a woman living with Parkinson’s. Lightner exercises her dynamic voice for the cause through a variety of channels.

"I write letters to the editor of the local paper [in Harrisburg, PA] and they have an "As I See It" column -- I’ve written about twelve of those," she says. "I write to my congressmen and senators. I also wrote a book called "Parkinson’s Disease and Me: Walking the Path." It’s my own personal story of before I got it. I knew something was wrong but wasn't sure what it was, and then there's my reaction when I first found out. I hid it for six years before I came out with it and became an advocate. I was diagnosed in 1993 at the age of 35. So it's been a while now."

Patti impresses upon me that one person can make a difference. "The Parkinson’s Action Network (PAN) was started in 1991 by one person, Joan Samuelson, a young lawyer out in California. She was the lone person walking Capitol Hill, trying to get the word out that we need a cure. From Joan, that one person, we had over 300 people at the [PAN] forum in March. Write to your representatives. They do listen to you."

Patti and her sister Linda have been walking with Ann's Quakers since 2004. The team's namesake, Ann Connor, is surrounded by family and friends and is quick to tell me about the "I Spat" pin she’s wearing. The personal genomics service, 23 and Me, has joined forces with the Michael J. Fox Foundation and the Parkinson’s Institute to recruit a diverse patient population of 10,000 participants. By assembling such a large community, they will be able to significantly advance research of Parkinson's. 

I wander among the colorful and rowdy sea of walkers as we embark on the gentle two-mile loop. Some teams are so big -- or so loud -- they're hard to resist. Kevin’s Clan, 75 large, is supporting Kevin O’Brien for a third year.

"It keeps getting bigger every year, although the first year we had about 80. I'm very blessed and fortunate," says Kevin. Although most of his family lives in the tri-state area, he travels all the way from Chattanooga, TN.

Team Purple On The Scene

Team PurpleThe hypnotic pull of a good vintage t-shirt draws me to Thomas Libetti and Jennifer Green, or as I fondly call them: Team Purple. "We're here supporting my mom," says Thomas. "We're just a small team. It's our first year." They have a significant presence for two people. 

Next I meet 5 for Fighting, a name decidedly fit for a band, but coined for Donna Rowley by her spirited daughter, Caitlin. "Last year was our first time. We had about 20 walkers, and this year we have about 30. Friends and family, new friends from the city, old friends from home. 5 for Fighting is our team name. My mom has five kids. Everyone’s used their different talents to organize something to support my mom, so I thought this was one of the ways we could do something together."

I continue along the path toward what appears to be something of a celebration, and indeed it is. Gerry’s Jammer’s, all 30 of them, are out in full-force this year in loving memory of Gerry Armstrong. Nothing but smiles, his daughter Natalie explains. "We're walking in honor my father. He passed away in January and had Parkinson's for 15 years. We do it every year, but this is a very special year. We're here from all over: Florida, Washington D.C., Virginia, Rhode Island, New Jersey, Connecticut. We’ve been walking since 2004 -- and we'll keep walking for everyone who has Parkinson's." I have no doubt they will.

Every little bit counts on the way to 1.2 million. Here are some stats: 

1. Ann's Quakers/Ann Connor – $1,520

2. Kevin’s Clan/Kevin O’Brien – $4,425

3. Gerry’s Jammers/Gerry’s Jammers – $5,895

4. Fighting/Donna Rowley – $3,138

5. Grandma Lynne’s Gang – $520

6. Team Galano Shake It Let’s Break It/Vincent Galano – $7,640

Lisa Germinsky is Tonic Profile's Contributing Editor.

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Patti Lightner

201 days ago

Thank you, Lisa for your story about the Parkinson's Unity Walk. I appreciate very much the awareness you raise by writing such a wonderful story. Once again, one person can make a difference. Thank you, Lisa.

You caught the essence of the Parkinson's community in person and translated it here in your story. You are correct that "no one is going down without a fight." It started that way and continues.

I like very much the positive tone of TONIC. Long overdue to have a positive venue to go to.
Best,
Patti Lightner

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