Archive for the ‘PKD’ Category

Sunday, November 14th, 2010

There’s been a flurry of very kind coverage lately of my quest to help cure PKD. Here are a few highlights:

** Kim Carollo wrote a great story that ran on the homepage of

** For the second year in a row, Andrew Galasetti invited me to write a guest post about PKD for Lyved.

** Merlyn Seeley and Diane Ursu of each wrote very nice stories about PKD and me; I’ve linked their stories to their names.

** And in much more important news, another molecular compound was found to have great potential for treating PKD. Pioglitazone is already approved for the treatment of diabetes, which means the path to testing it in humans should be shorter than if it were a brand-new compound.

So we’ve had a great couple of months. On October 9th I brought my manager’s wife and daughter, Victoria and Genevieve, to the Connecticut Walk for PKD, where we met a number of wonderful people, including the dynamic coordinator Jaime Lazarus and a rugby player who told us that when he needed a kidney transplant, he told his team, and received more than 20 serious offers within a week. He ended up matching with a teammate, who went ahead with the donation. I also met Kristen Neary, the leader of Helen’s Team. Kristen lost her infant daughter, Helen Grace, to ARPKD in 2002, and Helen’s Team walks every year to fight the disease that took her away. This year alone, Helen’s Team raised more than $9,500 to fight PKD. Some people just plain rock.

On October 23rd my manager was in Chicago for a PKD Foundation board meeting, but he flew back that night so we could all be ready for the TriState Walk for PKD. It was a gorgeous day. I met a young woman named Abby who played pro basketball in Australia and Sweden and now lives in southern New Jersey. She saw the article about me in ABC News, passed it around her family, and traveled up for the Walk, determined to do more to fight the disease that has debilitated her relatives the way it has mine. I also saw a bunch of old friends there — Louis Collier and his wife Maria, Richard Roth, Matthew Fulgieri, Robin Strachan, Rich Mauch, Florence O’Berg, and many, many more.

I was particularly honored to meet Kristin Krittman, whose daughter Brooke, born with ARPKD, died just three hours after being born. Kristin and her husband decided to help make sure future parents won’t have to go through the pain they endured, and their team, Brooke’s Bunch, has raised more than $16,000 so far.

If you ever start to forget why we do these Walks — why it matters to do all we can to cure this disease — just look at this picture of Brooke, and imagine what her life might have been like if we had known what to do to keep her alive. Count all the specialists Julia Roberts has gone to see to help her two kids with ARPKD, Gage and Quinnlin.

For all the Kristen Nearys and Julia Robertses and Kristin Krittmans out there who raise money for this Walk to help future parents, thank you. And to all of my donors over the years, thank you.

Because of you, our future is brighter. And because you know us, our future is part of your own future. So when you help us, you also help yourself. We’re cool with that.

You can still support me through December 31st! Please do!

— Kenny

Wednesday, September 8th, 2010

All around the country, we’re gearing up for the 2010 Walk for PKD. I’ll be at the one in Connecticut on October 9th, and then the one in New York City on October 24th. And my manager’s old friend Alexis Ohanian, cofounder of Reddit and of the delightful uncorporation known as Breadpig, is inviting people to help us out. Thank you, Alexis!

Please help Alexis help us raise the money we need to cure PKD. Check out my fundraising page — see me in costume, holding my manager’s baby girl — and donate today!

Friday, October 2nd, 2009

Last Saturday I was thrilled to attend the Hudson Valley Walk for PKD in Bedford Hills. What a wonderful place. The Walk was so well organized — thank you, Sam Friedlander, Heidi Cambareri, and many, many others — that everyone could relax and just have fun. Plenty of food came from Shop-Rite and Whole Foods. And as always at a PKD event, there was plenty of bottled water.

Of course we weren’t there just to have fun – but to help cure PKD. And Hudson Valley certainly did its part, bringing in more than $60,000 by the day of the Walk – and still counting!

At center is Luke Sclater-Booth, a young boy dealing with ARPKD, the brutal recessive form of PKD. At right is Stuart, Luke’s dad. Stuart donated a kidney to Luke a couple of years ago. Luke’s team, led by his mom Kirsten, helped raise more than $9,000 for research.

This Imperial Stormtrooper donated a kidney to a friend back in April. Did I feel jealous when some of the kids were more eager to talk to him than to me? You bet. Would I have made the same choice, if I was 10? You bet I would. Who doesn’t love a stormtrooper?

This motorcycle club came together to support one of their own: The woman in the white T-shirt. And in so doing, they made PKD, for just a few moments, seem cool.

Even idyllic Bedford Hills, NY, is not exempt from profiling.

Heidi Cambareri, at left, put on the Hudson Valley Walk for five years before passing the torch this year. Heidi and my manager’s wife, Victoria Brazell (center, great with child), are just two of the many wonderful people who came out to Walk for PKD. Thanks, everyone!! We’ll see some of you in Manhattan on October 25th!  – Kenny

Wednesday, June 24th, 2009

I spent most of Sunday, June 14th walking around the World Science Festival Street Fair in Manhattan’s Washington Square Park, amid the only sun most of us have seen all month.

What a renal blast. Here are a couple of highlights:

Me and Digit, a character from the PBS show Cyberchase.

Standing with two kids who kept pushing into my fabric, saying, "Squishie!", giggling, and running away.

Standing with three happy fans

Standing with three more happy fans

Hello from the Washington Square Park Arch

Thumbs up with Sid the Science Kid (also from PBS's Cyberchase)

With a friendly World Science Festival staffer

In front of the World Science Festival logo. Thanks, WSF - and particularly Peter Downing and Susan Magnano - for inviting me back this year! You do wonderful work, and I had a great time!

Tuesday, June 23rd, 2009

On Friday evening, March 27th, I was honored to attend a community-service event at New Jersey’s Westwood Regional High School. There I met a rare breed of students, who gave up a Friday night of sneaking around behind their parents’ kidneys to pollute their own. Instead they opted to describe their work on projects important to them — educating displaced kids in Iraq, fighting autism, saving what’s left of the planet, and, in the case of Ramy Youssef, curing PKD.

Here are a few of these great kids:


Thursday, March 5th, 2009

My manager was in our nation’s capital this week, asking the staffs of four senators and four representatives for a little more funding for PKD research, and a little help making more organs available to those who need them. Along with a number of old and new PKD friends from around the country, Bill met Iowa Sen. Charles Grassley (R) in person, and met the staff of Sens. Gillibrand (D-NY), Schumer (D-NY) and Harkin (D-Iowa), as well as the staffs of Edolphus Towns (D-Brooklyn), Paul Tonko (D-Upstate NY), Carolyn Maloney (D-NYC) and his old friend Tom Perriello (D-Charlottesville, VA & surrounding).

Each day, more than 16 Americans die while waiting for a kidney. We’re hoping to do something about that.

Tuesday, January 13th, 2009

Not long ago, bestselling author, Emmy-Award-winning actor and longtime talk-show host Charles Grodin gave of his time and himself to help fight PKD. My manager was thrilled to meet him at the Manhattan party, and was honored to introduce him, as you can see here: 

One of the unusual things about the generous Mr. Grodin is that he doesn’t mind being insulted. But we’ll let him illustrate that:Mr. Grodin did a wonderful thing by volunteering his time. He brought laughter and fun to an evening that brought together a number of good people who hadn’t seen each other in years. And it was all to benefit PKD research — the research that will one day keep my brother and sister kidneys from getting too big for their britches.

Charles was kind enough to mention our event in his NY Daily News column: 

Good reasons to leave the house

He also told a reporter from the Stamford Advocate about us, in a story that was picked up by

CBS Film series  features Grodin, ‘Midnight Run’

Charles spoke movingly at the event about losing his father to renal failure. He understands the importance of kidneys. The event was hosted by the very generous people at Select Office Suites, who donated not only the space but the labor of several employees. Thank you, Ray Lindenberg, Angela Olivo, Claire Karwan-Cutting, Dominick Olivo, Luz Estella, and everyone else at SOS for helping make this event wonderful! Thank you, Louis Collier and family for making it all work. Thank you, Kathy Leeds, for putting us in touch with Mr. Grodin. Thank you, Carolyn Brewer, for putting us in touch with Kathy Leeds. And thank you, Mr. Grodin, for making us laugh, and sharing your time with a cause you’d never heard of before. We were already big fans of yours — now we’re even more fanatical. All footage shot by my manager’s wife, the lovely and talented Victoria Brewer.  — Kenny

Monday, October 20th, 2008

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

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Monday, October 20th, 2008

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

Thursday, October 16th, 2008

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