One of the best ways to raise awareness for PKD is to get creative! The more unique you can make your methods of educating others, the more it will stick with them. We recently reached out to Bill Brazell, a member of our board and a PKD patient himself, who found a creative way to teach others about PKD with his favorite costume: Kenny the Kidney.
Some years ago I had a great neighbor in Brooklyn named Travis Donia. I told him that few people had heard of the disease I had, so I was trying to think of some way to get the word out. Travis listened kindly, and said, “There’s someone you should meet.” Soon Travis brought me to meet his friend Halley Hopkins. After a moment, inspiration struck. “Dude!” she said. “You need a costume!”
I blinked. “Um,” I said. “Okay. Where would I get one?”
Her eyes narrowed. “There are two people you should meet.”
Weeks later I went to a party. Compared to everyone else there I was old and square. I shook hands with Rob Czar and Corinne Leigh, the stars of a web-video series called “Threadbangers.”
“Dude!” said Rob. “I hear we’re going to make you a costume!”
I tried to exude hip confidence. “That’s what Halley tells me. What do you think?”
Corinne said, “We’re doing it!”
A few months later, a gigantic FedEx box from Florida arrived at my mom’s home in Schenectady, NY. Inside was my bright-red costume. It was amazing. And Rob and Corinne wouldn’t even let me pay for the shipping.
Wearing the costume does a few things:
(1) It shows prospective donors that I’m committed to raising money to cure this disease — and that while I’m serious about the disease, I don’t take myself too seriously. Many of my friends have increased their donations as a way of tipping their hat to the costume. When we commit to something in an obvious way — when we don’t mind looking foolish — we often inspire others to support us.
(2) It inspires contempt in the eyes of some people who have no idea why a grown man is wearing a big costume and don’t want to learn. The first couple of times I saw that contempt, and heard people joking with each other about me as if I wasn’t there, I wanted to hide. But now it makes me laugh, because I realize that their contempt comes from fear. They don’t know what I’m up to. And if I saw a big guy walking around like this, I might be suspicious, too.
(3) It makes many members of the PKD community smile.
(4) It also unsettles some, who may wonder if perhaps I don’t take the disease seriously enough — if I don’t understand the pain PKD causes. I understand that confusion. It’s a delicate thing to walk around smiling in a goofy costume to call attention to an unpleasant disease. I do it because fun and humor seem to attract money that wouldn’t flow toward frowning faces — and I want my donors to associate me with optimism. But I certainly understand the misery. PKD took my cousin Michael’s life when he was 35, leaving two very young children behind. A few years later it took his father, the uncle to whom I was closest. PKD threatens me, my brother, one of my sisters, a few cousins, probably some of our kids, and a whole lot of other wonderful people I’ve gotten to know since I started Walking for PKD. I get it.
(5) It makes kids smile — including my own — even if they don’t yet know what a kidney is. It also makes a lot of grownups smile, and their smiles make me smile, making it more fun to join the fight to cure PKD.
Not long ago the costume, while still fun, was starting to fray. The cysts had fallen off. It looked sad.
I learned that Libby Fearnley, the mother of one of my daughter’s classmates, made clothes. She very generously offered to make me a new Kenny costume. She made a great one.
We each fight PKD in our own way. I’m lucky enough to do it in costume.