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Drudge doesn’t have this. Woodward doesn’t. The New-York-freakin’ TIMES hasn’t got it, people. My manager’s wife filmed it Saturday. Had to smuggle the disk past a couple of NYC subway guards like she was a kidnapper in “Pelham One Two Three.” But she did, and it’s here:

You wondered how the Walk really was. Now ya know some of it. What may not come through is how cold it sometimes got, and how warm were the hearts and kidneys all around us. — Kenny

Posted on October 20th, 2008 | Filed under PKD | No Comments »

Thanks to thousands of renally generous people all over the country, the 2008 Walk for PKD has been a big success — and Los Angeles has yet to Walk. I was fortunate enough to walk for a couple of teams this year. I captained “Mike & Poppy’s All-Stars,” which walked in Albany, NY, on September 21st, while my manager was on his honeymoon. (He and his bride Victoria walked an extra mile in Tanzania that day, then joined the TriState Walk in Manhattan this past Saturday, October 18th.) I’m thrilled to report that “Mike & Poppy’s All-Stars” brought in more than $27,392 — and we may see a few more donations trickle in before the deadline of November 9th. If you’d like to help us out, we’d love it! Please click here.

Meanwhile, enjoy the photos. Here they are — look at this wonderful team:

From left, that’s Colin Brazell (cousin of Mike Brazell, nephew of Poppy), with Drew Rafferty (nephew of Mike Brazell, grandson of Poppy) on his shoulder; Carol Warburton (friend of Colin and family); Tracy Rafferty (sister of Mike Brazell and daughter of Poppy); Mike McCullough (stepson of Poppy); Lynn Schramm (mother of Mike Brazell); Dan Bouchard (longtime friend and co-worker of Poppy and Mike Brazell); Rachel Brazell; Lew Krupke (longtime friend of Poppy); Mary McLear (stepdaughter of Poppy); Wendy McCullough (wife of Mike McCullough); Linda Brazell (who stepped up to make the Albany Walk happen; she’s also my manager’s mother); two people I can’t identify; Kristin Burns; one person I can’t identify; Alan Connelly (cousin of Mike and Poppy); Julie Connelly (Alan’s daughter); Betty Connelly (Alan’s wife; Julie’s mom); another person I can’t identify; Mary Ann Brazell (Mike’s cousin; Poppy’s niece); and Mary Ann is holding her daughter Claire.

Front row, from left:  J.T. Rafferty (Mike Brazell’s nephew; Poppy’s grandson); Carter Brazell (Mike Brazell’s son; Poppy’s grandson); Denise and Devin Brazell (Mike Brazell’s widow and daughter); Mary Burns (cousin of Poppy and Mike); Brian Campbell (cousin-in-law of Mike and nephew-in-law of Poppy; married to Mary Ann Brazell); their daughters Elizabeth Campbell and Fiona Campbell.

Colin, Victoria and me at the TriState Walk. Victoria and I are proud honorary members of the “Los SOS PisKaDillos” team, which raised an awe-inspiring $1,000 for PKD research. Thanks, guys!!

 

Most of Los SOS PisKaDillos, including, from left: Michelle Calderon, Claire Karwan-Cutting, Linda Brazell (my manager’s mom), Colin Brazell (manager’s brother), Victoria Brewer (manager’s wife), team captain John Shankman, Henny D. Penguin, me,and several others, including, in no particular order, Evelyn Susara, Francia Gomez, SOS Manager Ray Lindenberg, Elizabeth Rampon and Bertha Misteroni. Also there that day: Ceasar Bagui, Dominic Olivo and Heather Maisto. We had a fantastic time. Can’t tell you how much it meant to me to see all the great people of SOS coming out for the Walk on a blustery day.

Thank you so much to the great team at SOS! Los PisKaDillos were there in force!  — Kenny

Posted on October 20th, 2008 | Filed under generosity, kidney, PKD, renal | No Comments »

Profitable insurance companies aren’t stupid. They know that the best way to remain profitable is to deny coverage to people who might actually need it. For health insurance, that means people with preexisting conditions — that is, up to 13 percent of America.

Americans with chronic health conditions who lose their health insurance face bankruptcy. Bankrupt, they can’t even take care of themselves, let alone their children, or future generations of unborn children. They’ll die sooner than they need to, and they won’t be able to provide the next generation with the education or values they hold dear. I live in great fear that this will happen to me. And I know I have a lot of company.

This year’s winner of the Nobel Memorial Prize in Economics, Paul Krugman, pointed out in an October 6 column that deregulating the insurance industry would jeopardize health coverage for those with preexisting conditions.  As Krugman explained, under McCain’s plan, “the people losing insurance would be those who need it most: lower-income workers who wouldn’t be able to afford individual insurance even with the tax credit, and Americans with health problems whom insurance companies won’t cover.”

Right now that certainly means PKD, but it also means cancer cases that are in remission, old sports injuries, being 20 pounds over- or underweight, and even having acne — almost anything at all. In the near future, pre-existing conditions will knock out even more people, as genetic research uncovers predisposition for all manner of conditions whose chromosomal links are now unknown.

Deregulating insurance companies means exposing millions of hardworking Americans to bankruptcy and early death. It’s bad policy, and we should oppose it with every fiber of our kidneys.

Even if you oppose abortion, you should support Obama. Obama’s approach to health care will best ensure Americans’ ability to take care of their children. He’s the real pro-life candidate. — Kenny

Posted on October 16th, 2008 | Filed under genetic information, kidney, PKD | No Comments »

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 www.vrbo.com : 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 pkdmnchapter@comcast.net 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

Posted on September 3rd, 2008 | Filed under generosity, kidney, PKD, renal | No Comments »

I’m just a kidney, but I can’t help but note this gaffe in a document from McCain’s camp. This is how the document reads:

REPORTED FALSEHOODS AND SMEARS AGAINST GOV. PALIN’S FAMILY AND HISTORIC CANDIDACY:

• Liberal Bloggers Questioned Whether Gov. Palin’s Fifth Child Was Actually Bristol Palin’s Child.

“‘Where has Bristol Palin (far right, holding Trig, with a ring on her wedding finger) been for the past year? Has she been attending high school? Or was she absent because of infectious mononucleosis for between five and eight months, as is now being reported on the Internet? Why would a 43-year-old woman, on her fifth pregnancy, with a Down syndrome child, after her amniotic fluid has started to leak, not go to the nearest hospital immediately, even if she was in Texas for a speech? Why would she not only not go to the hospital in Texas, but take an eight-hour plane flight to Seattle and then Anchorage? Why would she choose to deliver the baby not in the nearest major facility in Anchorage but at a much smaller hospital near her home town? Why did the flight attendants on the trip home say she bore no signs of being pregnant?’ It strikes me as likely that there are reasonable answers to these questions — more reasonable than the only one given so far” (Andrew Sullivan, “Things That Make You Go Hmmm,” The Atlantic’s “The Daily Dish” Blog, Posted 8/31/08)

I realize the McCain people are just discovering the Internet, but can’t they at least *ask* someone? Andrew Sullivan’s been around a long time. Anyone who pays any attention to politics knows that he’s a conservative Roman Catholic. He’s an independent thinker, sure. And he’s gay, which does give him a unique spin. But liberal? Don’t think so, folks. — Kenny

Posted on September 3rd, 2008 | Filed under Uncategorized | 1 Comment »

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

Posted on September 1st, 2008 | Filed under generosity, kidney, PKD, renal | No Comments »

For his 40th birthday this year, my manager’s fiancée gave him something he’d always wanted: The chance to parachute out of a plane. So the two of them drove up to The Ranch with their friends Halley and Pin-Bo a few weeks back, and leapt out of an airplane. He says it was scarier than he’d imagined it would be to sit in an ascending airplane, looking at an open door, with a plan to jump out of that door. And Bill had no chute of his own; he was attached in four places to his tandem instructor, John. Here’s what they looked like a second or so before they rolled out:

And here’s what they looked like a few seconds later:

And a few seconds after that:

He says he had a blast, and felt a wave of gratitude and yes, even affection for his tandem instructor once they landed. After all, he had depended on this stranger for his life, and the stranger had taken good care of him.

He says it was an amazing experience to fall out of the sky for some 60 seconds, longer than he’d ever fallen before in his life.

I’ll take his word for it. If God wanted kidneys to fly, She’d have given us wings. — Kenny

Posted on August 16th, 2008 | Filed under kidney | No Comments »

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

Posted on August 1st, 2008 | Filed under cysts, kidney, organ donation, PKD, renal | No Comments »

My manager’s hip, innovative employer, Federated Media, just launched this cool site in connection with a great music festival that’ll take place in Golden Gate Park on August 22nd, 23rd and 24th. Radiohead, Primus, Beck, Tom Petty, Wilco … helluva lineup. Wish we could be there. If you’re lucky enough to live nearby, check it out! – Kenny

Posted on July 31st, 2008 | Filed under Uncategorized | No Comments »

On July 1, my manager learned that one of his former teachers, Clay Felker, had died at the age of 82. Clay led an amazing life. My manager took a class from him in 1995 at UC Berkeley, which named a magazine center after Clay. The school did this to honor him for having founded New York and Ms. Magazines, and for mentoring so many wonderful writers — Tom Wolfe, Gail Sheehy (whom Clay ultimately married, and who took such great care of Clay while he was ailing for the past 12 years), Gay Talese, Gloria Steinem, and on and on.

Clay’s funeral was very moving, my manager says. Clay had been in the Navy, and two sailors who doubtless never met him performed a ritual with an American flag, finally folding it and handing it to Gail, as the Air Force had once handed a similar flag to my manager’s mother after his father died. As he watched the two young sailors perform with great solemnity and respect, it occurred to Bill that one of the few things these men could be certain of is that someday, they, too, will be honored in this way.

Tom Wolfe, who wrote a wonderful cover story about Clay, read excerpts from it aloud at the funeral reception, which Mr. Wolfe hosted. While there, Bill was able to talk with one of his great idols, Robert Caro, and with Robert’s wife, Ina — and to tell him that he, Bill, had managed to convince his, Bill’s, book club to begin to read his, Robert’s, immense and spectacular biography of LBJ. Bill wondered for a moment if it might somehow be wrong to pass the time at a funeral by meeting some of the amazing people in attendance. But then it occurred to him that Clay himself would certainly have approved — and, if Clay had seen Bill *not* meeting such people, he, Clay, would have scolded Bill, saying, “Well, there they are — what are you waiting for?”

Clay is gone, but his voice remains, in the heads and hearts of all who met him. Bill feels lucky to have been one of them.

Posted on July 18th, 2008 | Filed under Uncategorized | No Comments »

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