If you've read my recent blog posts you may have noticed I've been on a little jag lately about wearing costumes in races and raising money for good causes.  I'm not sure what got into me...maybe it's just because I'm a fan of costumes and ridiculousness in general.  But in the spirit of keeping Halloween (my all time favorite holiday) alive for one more week, I have one last blog post about a costumed crusader that I want to share. 

A few months ago, one of my co-workers introduced me to Bill Brazell.  Bill is a pretty amazing guy.  He's a Harvard grad with a masters degree from Berkeley. He's on the board of trustees for the National PKD Foundation and he's worked with some pretty cool companies like Federated Media and Etsy.  But what I find most amazing about Bill (and maybe I'm just a little jealous) is that he rocks out a gigantic kidney costume to help raise awareness for PKD.



Never heard of PKD?  You're not alone. Most people haven't.  PKD stands for Polycystic Kidney Disease. 'Poly-' means 'many' -- people with PKD have many cysts, or pockets of fluid, throughout their kidneys. PKD comes in two forms. The dominant form, ADPKD (autosomal dominant PKD), is much more common, occurring in as many as 1 in 400 people. When a person with ADPKD has a child, the child has a 50-50 chance of also developing ADPKD, which can lead to kidney failure in the thirties, forties or fifties. The recessive form, ARPKD (autosomal recessive PKD), is rarer and more brutal. Thirty percent of children born with ARPKD fail to live even a month after their birth. Of those who do make it a month, another 28% will die before reaching their tenth birthday.

Basically PKD is a pretty awful disease that few people even know about.  But the good news is that researchers are super-close to finding a cure.  That's why Bill is on a crusade to get the word out and raise money for research.  This past weekend I was in New York and had a chance to catch up with Bill and learn more about PKD, the PKD walk and gigantic polycystic kidney outfits.  Check it out.


(1) Tell us a little bit about what motivated you to get involved in the PKD Foundation?

I got involved because my father had PKD, and I was diagnosed when I was a freshman in college. For many years I found the whole idea vaguely depressing, and I waited passively for 'science' to find a cure. It never really occurred to me that I could help science along. Then my first cousin, Mike, died of PKD complications, leaving behind two young children. He was just 35; had been born less than five months before I was. His death jolted me into doing what I could to hurry 'science' along -- to raise money and awareness so a cure might come more quickly. 

(2)  You just participated in the Tri-state PKD walk on Oct 25th. That's one of the big fundraisers for PKD. How'd it go this year?

A normal human kidney is the size of a fist, and weighs a few ounces. A polycystic kidney can grow as large as a football, and can weigh 38 pounds -- just one, and people tend to have two. Imagine finding room for two 38-pound footballs in your gut! 

Kenny the Kidney is a polycystic kidney who grew larger still. We think his original body consumed a radioactive milkshake. Whatever the reason, Kenny stands more than 6'6" tall, and weighs more than 185 pounds. Coincidentally, I have the same measurements.

I told a woman I'd just met, Halley Hopkins, that I wanted to raise awareness of PKD, maybe by climbing the stairs of the Empire State Building -- something foolish, I didn't know what. Halley, who is now a good friend, said, "You need a kidney costume! And I know just who will make one for you." She asked Corinne Leigh and Rob Czar of Threadbanger.com, who had never met me, to make a kidney costume. They kindly agreed, and made a wonderful costume, and FedExed it from Florida, which was then their home, to Schenectady, NY, in time for a Walk for PKD nearby. And they wouldn't take a penny for the costume material, or the labor, or the shipping -- nothing. Meanwhile, Travis Donia, who had introduced me to Halley, built me a web site, and then revamped it with the help of Claire D'Aoust and Yoshi Uemura. And Ramy Youssef, an amazing guy who was then in high school, offered to work with his friends Kyle, John, Chris and many others to make a music video for Kenny
.  

None of these good people had ever heard of PKD before they met me. Yet all of them worked for free. They worked much harder than some people in my family, who you might expect would be more motivated to cure it. The generosity of these people -- it brings tears to your eyes. Or would, if I weren't so macho. 

This is something that puzzles many of us who deal with PKD, and we've come up with a number of possibilities: (1) We have no big celebrity talking about PKD. The great playwright Neil Simon has PKD, but doesn't like to talk about it. The humorist Erma Bombeck died of it, but, like Mr. Simon, was from a more private generation. (2) People with PKD can hide the fact that they have it. No one would know that I have it, except that I talk about it, and sometimes walk around dressed as a kidney. As opposed to people with ALS or other illnesses, people with PKD have a choice whether to disclose. I kept quiet about it for many years, and only began talking about it after my cousin died, and I realized that if I did nothing, I might be next. Silence won't cure PKD. But many who have it remain silent, because the risks of disclosure are real -- loss of health insurance, loss of employment opportunities, loss of relationships. (3) Most of the people who have PKD don't yet know that they have it. When they find out, some become activists, some don't -- as with any disease.

Those of us in the PKD community understand well what the Waddington family, the ones featured in the NY Times and on CNN, has gone through -- the father needed a kidney transplant, but the parents forbade their two sons to get tested as possible matches, because they feared that one or both of them might turn out to have PKD -- and might be unable to get health insurance as a result. That scenario is very familiar to us, and we were grateful to the Waddingtons for going public about their dilemma, and to Nicholas Kristof and CNN for shining a light on it. We were also grateful to the CBS Early Show for talking about PKD, and to weatherman Dave Price for wearing our Walk for PKD hat. These mentions may seem brief to the rest of the world, but they mean a lot to us. Each year when we lobby our congresspeople on Capitol Hill in Washington, we have to explain all over again to a new crop of legislative aides what PKD is and why it matters. When we raise money for it, we have to first explain what it is. These media mentions give us something to point to: We're not the only ones who care about this disease. 

A number of talented volunteers made the Kenny the Kidney music video with the hope that it would spread -- that people would enjoy it, and pass it on to their friends. It would be lovely if your readers would do that. And if they enter a friend's email, they'll be able to see a couple of *secret* videos -- a new feature. We'll never abuse those email addresses; we don't even save them. We just offer the videos in an effort to get people to pass the word about PKD. Folks can also pass on the PKD Foundation's homepage, pkdcure.org, to anyone who wants to know more about PKD. The Foundation is there to help anyone who's newly diagnosed, or just wants more information about diet, etc. 

[editor's note:  Bill didn't mention this but he also has a fundraising page if you know anyone who would feel inclined to donate]

(8) Last Question.  Do you, by any chance, know this guy?   The giant testicle guy next to Pat was running for testicular cancer.  Perhaps a league of superheros is in order?