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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

Posted on November 14th, 2010 | Filed under cysts, generosity, genetic information, kidney, PKD, Uncategorized | No Comments »

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!

Posted on September 8th, 2010 | Filed under cysts, generosity, kidney, PKD, renal | No Comments »

Okay, not everyone’s comfortable with paying kidney donors. And we can talk about that sometime. For now, I’d just like to line up foursquare behind the effort to save lives by rewarding marrow donors.

Kidneys don’t have bones, and so can’t exactly donate bone marrow. But I wish I could! My manager had his blood drawn ten years ago in the hope that he might someday save a life by donating marrow. I hope you’ll join him. Imagine if the person who needed that marrow was someone you loved – your sister or brother, your child, your best friend. More of us need to sign up so that there are enough marrow types available. Sign up today!

Posted on January 8th, 2010 | Filed under Uncategorized | No Comments »

When a two-time Pulitzer-prize-winning New York Times columnist calls attention to an obscure disease you can’t stop thinking about, what can you feel but gratitude?

Dad’s Life or Yours? You Choose [NYT]

Thank you, Mr. Kristof, for shining a light on one of the terrible dilemmas faced every day by families with PKD. The dilemmas remain, of course, but your attention lightens our burden and gives us hope. Thank you! And thank you, as well, to the Waddington family, for going on the record about PKD. Many are unwilling to do so. But we’re stronger, and closer to a cure, when we stand up. You stood up. Thank you!!!   — Kenny

Posted on October 3rd, 2009 | Filed under Uncategorized | No Comments »

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

Posted on October 2nd, 2009 | Filed under cysts, generosity, kidney, PKD, renal | No Comments »

Andrew Galasetti writes and edits a very interesting blog called Lyved. (Rhymes with ‘Gived.’) When I emailed Andrew about PKD, he very kindly invited me to write a guest post for his site.

And now it’s up. Check it out, and if you like it, please leave a comment thanking Andrew:

Do What You Can – and Keep Smiling

Thank you, Andrew, for your time and the space on your blog!



Posted on August 28th, 2009 | Filed under Uncategorized | No Comments »

Hi, there:

You may have wondered what a Walk for PKD looks like. Check out this passionate, effective and brief video. Just over a minute long, it was created by Amy Epstein, whose husband Jeremy died so recently, with the help of a filmmaker named Sandra Beltrao. Most of the footage comes from last year’s TriState Walk for PKD in lower Manhattan.

This is why we Walk. Please support us. Please donate.



Posted on August 26th, 2009 | Filed under Uncategorized | No Comments »

Maybe I’m just too modest, but I hadn’t thought of myself as a fashion icon. Not until this morning, anyway. I’m deeply flattered and grateful that Beth Anderson, who runs the very fun fashion site Chic Galleria, apparently finds giant kidneys easy on the eyes. Today she launched a raffle to help raise money for PKD research — and she’s sending people right to this site to enter.

Thank you, Beth and Chic Galleria! And if you’re reading this and you’re not Beth, please visit Chic Galleria and leave a comment showing your support! There could be a $25 Starbucks gift card in it for you. Meanwhile, thanks so much, Beth! And welcome, Chic Galleria readers! If you donate, please remember to make your middle name “Chic,” so I can enter you into the raffle. Good luck!

— Kenny

Posted on August 19th, 2009 | Filed under Uncategorized | No Comments »

If you’re not sure that PKD research really needs your support, I hope you’ll please look at this photo of Jeremy Epstein.

A brilliant man who adored his family, Jeremy went on dialysis because of PKD when he was 44, and stayed on it for more than 18 years. Some years ago he got a kidney transplant, but it failed after a few months, and he resigned himself to dialysis for the rest of his life.

As Dr. Ron Perrone of Tufts, one of the world’s leading experts on PKD, points out, PKD hardly ever shows up on a death certificate. It didn’t for my manager’s cousin or uncle or grandfather, and it didn’t for Jeremy. But PKD took all their lives. A systemic disease, PKD among other things raises the levels of renin and angiotensin, and those increased levels raise the blood pressure. PKD makes people more susceptible to aneurysms than most people, as my manager saw with his cousin and uncle, and wears the circulatory system down. Two of Jeremy’s heart valves had become damaged over time, and he needed surgery this week. Knowing it was risky, he had postponed it until after the wedding of his beloved daughter Abby. Her wedding took place last Saturday. You can see her happy smile here.

My manager and his brother had dinner not long ago with Abby and David. Lovely couple. A couple of years ago, Abby told her employer how important PKD was to her family, and how close we were to curing it. Because she took ten minutes to explain that, her company donated $180,000 to PKD research. Abby’s mom, Amy, lobbied Congress for PKD research with Brian Campbell and my manager this past spring, and made a short video using footage from last year’s NYC Walk to raise awareness. (Check it out.)

Nine years ago, just before another risky operation (the doctors said the odds of survival were 50-50), Jeremy told his devoted, worried wife Amy that he would one day dance with her at Abby’s wedding. And he did, on Saturday night, to “Moon River.” As they glided around the room, smiling and proud, almost none of the guests knew how fragile he was.

He had a titanic will. My manager and his brother had dinner with Amy and Jeremy once, and they won’t forget the look in Jeremy’s eyes as he defended life on dialysis. He wanted no one’s pity. He knew that dialysis was keeping him alive, and he was furious with a writer who had equated dialysis with a ‘living death.’ He maintained his high-level law practice to the end. His co-workers never knew that he had PKD — never knew the many hours of dialysis he endured week after week, including when he traveled for business, for more than 18 years.

Jeremy was a silent warrior. He fought to maintain his life as he wished to live it, and to take care of his family. And he succeeded, for many more years than most people on dialysis can manage. He smiled at my manager when they saw each other at the PKD Educational Seminar in Manhattan on June 6th.

Everything we do to fight this disease matters. Everything. If you ask twenty friends to give $20 each, that’ll be $400 more for research. That $400 will bring closer the day when a man like Jeremy Epstein will be able to smile at his daughter as she returns from her honeymoon, and look forward to seeing his grandchildren. — Kenny

Posted on July 25th, 2009 | Filed under Uncategorized | No Comments »

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!

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