Archive for the ‘PKD’ Category

Wednesday, September 3rd, 2008

Check out this offer from PKD Foundation board member Gary DeGrande, a renal human who’s always looking for new ways to raise money for PKD research:

“We’re offering two weeks in our cozy country cottage home near Paris and one week in a four-bedroom luxury home in the Dominican Republic to the highest bidder. These homes provide unique vacation opportunities and have been donated, so all of the winning bid goes directly to the PKD Foundation. Both homes are listed on the popular VacationRentalByOwner website, so check them out at : ID 131432 for the French home and ID 148384 for the Dominican Republic home.

“The opening bid for each home is $1000, with subsequent bids at $500 increments. The referenced websites contain lots of  info and photos; for further details and to place a bid, contact Gary at or call 651 653 3958.  Please feel free to spread the word to your traveling friends. Thanks for your help.”

I’d go myself, but the presence of a giant kidney might upset the neighbors. So you should go in my place, & tell me how it was! — Kenny

Monday, September 1st, 2008

My manager’s working to get the word out about the annual Walk for PKD. The Walk is a critical source of the funding that will one day cure me of these pesky cysts, and free up my 26 million brothers and sisters all over the world, restoring them to comfortable function. I’ll be Walking in Manhattan with a number of interested humans on Saturday morning, October 18th. Join us!

Please support us by clicking right here.

Thank you!!  — Kenny

Friday, August 1st, 2008

My manager’s Google alert, which sends him each week a list of stories around the world that contain the phrase “polycystic kidney disease,” told him a few months ago about a novel whose main character has PKD. Guardedly curious, he found a used copy on Amazon for cheap. Before long we were both enjoying the book on many levels — I reading it when he was busy, and vice versa.

One of the functions of art is to convey the feeling that someone else has felt what we have felt — that we’re not alone in our fear, our anger, our lust, our sadness, or whatever feelings make us feel out of step with the expressions we see on the faces of the people around us. And one of the things that’s difficult about PKD is that so few people have ever heard of it. It can be lonely, having cysts. (And lonelier still being a giant kidney with cysts. It’s rare for me even to run into a giant kidney without cysts.)

What a pleasure, then, to read a clever, thoughtful, poignant novel whose narrator is dealing with the same cysts that trouble me. His mother died young of PKD, as many of my manager’s relatives have done. The narrator’s trips to dialysis; the annoying and sometimes desperate attention he has to pay to his diet; his constant awareness of the shortage of kidneys for those who need them; his upset feelings that so few of his friends are willing to donate their organs even after their deaths; the dark impulses he feels as he watches a motorcyclist and imagines him falling, dying, giving up at last the kidney the narrator so desperately needs: for a person with PKD, to read “The Waters of Thirst” is to feel understood.
And understood in a way that is actually fun. For the novel contains a multitude of pleasures. The narrative voice is consistently funny, often causing this reader to smile and sometimes laugh out loud at tidbits that had nothing to do with PKD. The narrator, a young gay Londoner during the late 1980s or early 1990s, meshes intimations of PKD-borne mortality with those same intimations delivered then by AIDS — and eventually, surprisingly, folds them together. Both diseases waste people’s energy and can take people when they’re quite young — too young, in the popular imagination, to die. Of course there’s no such thing as too young to die, but young deaths hurt us more, scare us more and cause more grief than the deaths of those old enough to have had many turns at the plate. Years ago my manager visited a man once a week for nine months as that man died of AIDS, and will never forget the way the virus destroyed him. Nor will he forget watching people he loved his whole life die of PKD.

The brilliance of Mars-Jones is his refusal either to avoid the facts of early death or to hammer them too hard. Throughout the very funny descriptions of gay porn, the eggshell-thin etiquette of dinner parties, and the dissolution of the narrator’s relationship with the loyal and likeable Terry, humor is never more than a phrase away. Here’s Mars-Jones on those motorcyclists (being British, he splits the word “motorcyclists” in two. As Mark Twain nearly said, foreigners always pronounce better than they spell):

“I mean, every vehicle is a potential accident, I realise that, but motor cyclists really are organ donors-in-waiting. A dab of grease or a handful of gravel, and a motor bike just wants a good lie down. … As time went by, I found my eyes were drawn to the rear contours of bikers’ leather jackets. The handbook recommended wearing a jacket with an extra panel of padding at waist level. It was for kidney protection. My immediate reaction was, oh yes, protect those kidneys. We don’t want anything to happen to them.”

Regardless of his motives, I wholeheartedly approve of the narrator’s urge to protect the kidneys of total strangers. I do wish more people felt as he does.

American humans are not nearly as familiar with the name Adam Mars-Jones as they should be. “The Waters of Thirst” is a marvelous book. My biases are obvious, but whether your kidneys make too many cysts or just the right number, if you’re not afraid to read descriptions of gay porn — a recurring and consistently hilarious theme — then by all means read this book. (If you can find a copy, that is: Amazon and B&N offer only used copies. That’s a real shame. This book should certainly still be in print. It’s a masterpiece.) — Kenny

Wednesday, June 4th, 2008

I spent a chunk of Saturday at the street fair of the first-ever World Science Festival, talking with kids and their parents about PKD.

I was happy to meet Miss Frizzle:

She was right near the Magic School Bus:

Also happy to meet Digit, of PBS’s Cyberchase:

And to spend a little quality time with my manager’s fiancée (please don’t tell him!):

We also saw two cool discussions — one on the origins of the universe (“Echoes from the Beginning”), and one on What It Means to Be Human. After the “Human” one (sounds like it’s easier being a kidney), I got to shake the hand of the renal Francis Collins, and thank him for his steadfast support of the Genetic Information Non-Discrimination Act, which passed recently with his help. Dr. Collins has been a great ally for PKD over the years. So has Alan Alda, who I tried but failed to greet.

Many thanks to organizers Brian Greene and Tracy Day, and producers Susan Magnano and Peter Downing, for inviting me to stop by. A great time was had by all kidneys and most humans. — Kenny

Saturday, April 5th, 2008

As it ran in the Albany Times-Union two weeks ago. Posting it here in case it ever becomes hard to find there. Thought you might like to see what one family has lost to PKD, and yet how they’ve been able to keep love and joy alive. My manager considers himself lucky to have known his uncle for as long as he did:

Brazell, Richard C. SCOTIA Richard C. (Dick) Brazell, 64, of Cambridge Manor Drive, Scotia, died of a short sudden illness, Thursday, March 13, 2008 in Orlando, Fla. Born June 30, 1943 in Schenectady, N.Y., son of Ann Brazell and the late William T. Brazell. He was a graduate of Siena College and was employed by the Amica Insurance Co., with a 30 year career in underwriting. He was a U.S. Army veteran during the Vietnam Era. Dick loved and was loved by many. To know him was to love him. He had a zest for life and fun. Worldly accomplishments weren’t his thing, but helping others was. He was the “solution” man and many considered him their mentor. Affectionately known as Poppy, he avidly followed the grandchildren’s sports activities near and far over the years-most recently JT’s, Drew’s and Carter’s hockey, Devin’s dance and Jackie’s and Kaitlyn’s soccer. In the past, it was Jimmy’s baseball, David’s bowling and Sarah’s basketball and softball, not to mention friends’ kid’s sports. Golfing with his friends and family was special and he once had a hole in one. And there was fishing with the grandchildren and friends. Dick always made time for everyone doing what he could to help in a situation and was blessed with the gift of wisdom which he generously shared. Despite his many health issues over the years, Dick carried on, never complaining. He cherished his recovery life and leaned on his loving family and friends in his times of trial and sorrow. He will be greatly missed. Mr. Brazell married his wife, Margaret, April 26, 1975. Besides his wife and mother, he is survived by a daughter, Tracy (Jay) Rafferty; stepchildren, James (Sharon) McCullough, Margaret (Peter) Marshall, Marybeth (Michael) McLear, Michael (Wendy) McCullough; grandchildren, Carter and Devin Brazell, JT and Drew Rafferty, Jimmy and Sarah McCullough, David McLear, Jackie and Kaitlyn McCullough. Also survived by several sisters-in-law and brothers-in-law; several nieces, nephews and cousins. He was predeceased by his brother, William T. Brazell Jr. and his son, Michael J. Brazell. Calling hours will be Monday, March 24, 4-8 p.m. at DeMarco-Stone Funeral Home, 1605 Helderberg Avenue, Rotterdam. Services will be at 9:15 Tuesday morning from the funeral home thence to Saint Joseph’s Church, Scotia for a Mass of Christian Burial at 10 a.m. Interment in Most Holy Redeemer Cemetery. In lieu of flowers, it is requested that memorial donations in his name be made to PKD Foundation, 9221 Ward Parkway Suite 400, Kansas City, MO 64114-3367.

Wednesday, April 2nd, 2008

A fellow PKD volunteer, Amy Epstein, has done a wonderful thing. Starbucks is soliciting community-building ideas, so she suggested a penny for PKD research.

Why Starbucks? ‘Cause one of their renal baristas donated a kidney to a customer, a woman with PKD. Wow.

Please help us nurture this relationship with Starbucks. Here’s how:

1. Click on this link. It’ll take you to Amy’s proposed campaign in the “Building Community” section of
2. Where it says “Sign In”, please create an account.  Make up a User Name, Password, email address (you can make up a new one for each account) and screen name.
3. The next page offers you the option to “Vote” so please click on the “Vote”.
4. The page after that offers you a search box in which you should type in “PKD”.
5. The page after that shows the name of the campaign: How about “A Penny to Fight PKD” Campaign.  Click on it.
6. Finally, on this page, click on the check mark “VOTE”.  It will add 10 points to our voting score.   Scroll down and add your comments.

Join us! And please lemme know if you add your vote. I’d love to thank you publicly — or privately, if you prefer.

— Kenny

Friday, March 28th, 2008

Had to pass on this link, showing my friend, the renal Karyn Waxman, putting herself out there to tell Greater Memphis — and now you — all about PKD.

Go, Karyn!

Wednesday, March 19th, 2008

My manager’s uncle, Dick Brazell, died of PKD complications last week on World Kidney Day. A few hours after I tried and failed to get onto the “Today Show” (security restrictions since 9/11 prohibit costumes anywhere near the camera), and got my sign briefly onto “Good Morning America” (resulting in a woman in Orlando reading the sign, coming to this site, and shooting me a most welcome email), my manager’s uncle, in great pain, went to the hospital.

The doctors operated on him, apparently to prevent an aneurysm he’d been carrying from rupturing. That part of the surgery seemed to succeed, but then he took a turn for the worse, doctors said, and died.

My manager, Bill, grew up with his Uncle Dick always around, showing everyone how to have more fun. Dick knew he had an aneurysm, and knew that it might someday rupture, but continued to golf and enjoy life because, as he said, “What else would you do?”

Dick’s family is very sad. It’s yet another sudden death, and another from PKD. Dick’s 90-year-old mother has now lost her husband (at 44), both of her children (at 42 and 64), and one of her grandchildren (at 35) to early, sudden death, and three of those four died because of PKD. (The other one, Bill’s father, drowned.)
My manager is sad and angry: Sad at the shocking losses — each of which reminds the family of the ones that came before — and angry at the disease that keeps taking away his relatives before their time.

— Kenny

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Monday, February 11th, 2008

Leigh Reynolds had never heard of PKD until she took a job with the PKD Foundation a couple of years ago. As the National Walk Manager, though, she brings tremendous enthusiasm and all-around great spirit to the fight against PKD. My manager, Bill Brazell, has been lucky enough to see Leigh many times — at last year’s PKD Convention in Florida, at board meetings and at the 2007 PKD Walk in Albany, NY. Leigh has given a great deal of herself to this cause — and always with a big, warm smile. You always feel that she’s having fun.

A few short weeks ago, she gave something more: She donated one of her kidneys to one of the volunteers she was helping to manage. She’d met Dean Benigno, a realtor in Phoenix, when he became the volunteer coordinator there. Now he badly needed a kidney, because PKD had ravaged the ones he was born with. Leigh felt called to give him one of hers, if there was a match. Lo and behold, there was — and on January 17th, she gave her kidney to Dean.

From all 13.5 million of us who deal with PKD, Leigh — Thank you! You are a shining light in a troubled world. Thank you, thank you, thank you.

Wow. Kinda makes you wanna go out and do something nice for someone, doesn’t it? My manager says Leigh’s gift has already inspired new donations to the PKD Foundation. Feel free to join in — a few dollars is a lot easier than giving a kidney!

— Kenny

Monday, January 28th, 2008

My manager took a course at Gotham Writers Workshop with this writer a few years back, and says he’s thrilled to see Charles getting this kind of recognition. A glowing profile in the Sunday NY Times Magazine, written by Chip McGrath, who used to edit the NYT Book Review? What else could you ask for? Bill says no one’s worked harder at his writing than Charles Bock, through a lot of years when he had to wonder why he kept going. Bill hopes everyone runs out to buy Bock’s new novel, “Beautiful Children” . It hits stores tomorrow.

Bill and his fiancée spent Thursday through Sunday with the rest of the PKD Foundation board of trustees in San Diego. He says it can be tiring to sit in hotel conference rooms for hours on end, but he always comes away energized by his contact with a diverse group of smart, interesting, renally committed people who are doing everything they can to cure PKD. Thanks, board! And congrats, Charles!

— Kenny

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