CHAMPs > Parkinson's CHAMP

October 2013 - Susan Whitlock


For me, it was all about the fundraising.

Does that sound crass? Let me explain.

My mom, Patsy Whitlock, was diagnosed with early-stage Parkinson’s late in 2012, toward the end of what had been a very challenging year for my husband and me, and just weeks before we were to move from Atlanta, Georgia, to New York City. Frankly, I had no time to think about it. I shed a few tears but I had very little sense of what it would even mean.

In December, in New York, I met up with a friend from high school (we’re 50ish now) whose father had been dealing with PD for ten years. She gave me a sense of what we could expect and of solidarity.  Then I went back to unpacking my boxes.

So when I saw a poster for the Parkinson’s Unity Walk in April, on the side of a phone booth near my house on the Upper West Side, I still felt brand new to the whole idea. It was late, less than two weeks until the Walk, and everyone I approached about walking with me—that high school friend, my sister, my mother herself—already had other plans.

But with ten days to go, I just decided I was going to do it.

And then I started reaching out to people to sponsor me with donations.  And here is what I found out: people love my mother, and they love me, and they want to help. And almost everyone knows someone who’s been affected by PD.

The quick response of so many people to my appeal not only gave me the empowering feeling of doing something worthwhile, but it also cut the isolation in a very real way and made me realize we are part of a huge community.

My strategy was to write only to people who knew both my mother and me. Because my mom had been reticent about telling people her diagnosis, many friends and family were learning of it for the first time. They were shocked, but also motivated, because they heard it in a context where they could do something to help.

I had initially set a very low fundraising goal of a couple of hundred dollars. By the time of the Walk I had raised over $5000, and when the final contributions rolled in, my total was over $6500, with a participation rate of 80-90 percent! I made a list for my mom of everyone who had made a gift in her honor, knowing it would lift her spirits and make us all more determined to fight the disease.

Buoyed by that incredible network, I went to the Walk itself beaming. My best friend, Jennifer, came down from Boston to join me on a gorgeous spring morning. I loved listening to the pre-Walk talks about recent research successes, and seeing the thousands upon thousands of other walkers in their bright team t-shirts (including the Miracle Marvins, whose Aunt Annie, one of my mother’s childhood friends, told me to look out for them along the way).

I’ve already begun to think about next year’s Walk, whom I’ll tap for contributions and who might want to walk with me. My sister and one cousin, for sure.  That’s the start of a team. And with luck, next year Mom will do it with us!

Susan Whitlock
PUW Walker