Walking with new joy

This is a guest post.

A number of my relatives died decades too soon because of polycystic kidney disease, or PKD. People with this condition grow cysts, or pockets of fluid, throughout their kidneys, ultimately preventing them from cleaning the blood. In 2003 complications of PKD took my cousin and good friend Mike Brazell at the age of 35, leaving two young children behind. Mike’s father, my Uncle Dick, affectionately known as Poppy, succumbed to PKD a few years later. I inherited PKD from my dad, as did two of my siblings; at least three of our cousins have it, too. A dominant gene causes PKD, so when someone with PKD has children, each child has a 50% chance of inheriting it.

For years I avoided thinking about PKD (this article from a few weeks ago quotes me on that subject: http://bit.ly/acZXO4), but when we lost Mike, I decided to help fight it. I donate money each month to the PKD Foundation (www.pkdcure.org) and serve on its board, as we help the staff follow the most promising paths to a cure. I learn as much as I can about how proper diet and exercise can slow PKD’s progression, practice those habits, and share the info with the hundreds of people I know who also have it. (Although little-known, PKD is far more common than cystic fibrosis, sickle cell anemia, Down syndrome, Huntington’s disease, muscular dystrophy, and hemophilia combined. The humorist Erma Bombeck died of it, the playwright Neil Simon lives with it, and former Today Show fashion maven Steven Cojocaru has already needed two kidney transplants to keep going. I know of two other public figures who remain in the closet, and there are undoubtedly others.) For four years I’ve taken an experimental drug that shows a lot of promise. And each fall, dressed as Kenny the Kidney, I walk as the captain of “Mike & Poppy’s All-Stars,” raising far more money from friends than I can afford to donate on my own. I’m writing to ask you to please add your own quick effort to this fight. We’re very close to a successful treatment. You can help get us over the hump.

Last year’s TriState Walk for PKD, on October 25th, was the single biggest event the PKD Foundation has held in its 27-year history, bringing in more than $270,000. That would be fantastic in any economy, but particularly in this one. Eleven days after last year’s Walk, my lovely wife Victoria gave birth to our delightful daughter Genevieve, whose arrival gives us two new reasons to Walk: (1) We obviously want to make sure that if she inherited PKD from her old man, it will never trouble her, and (2) We’d like to ensure that she has more time on Earth with her old man than her old man had with his old man.

If you can help, please consider giving a donation at my fundraising page: http://www.pkdcure.org/kenny . And if you do make a donation please put “Lyved” as your middle name so that we can know that you’re a fellow Lyved.com reader.

Thanks so much!