Archive for the ‘Uncategorized’ 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

Friday, January 8th, 2010

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!

Saturday, October 3rd, 2009

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

Friday, August 28th, 2009

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!



Wednesday, August 26th, 2009

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.



Wednesday, August 19th, 2009

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

Saturday, July 25th, 2009

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

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!

Friday, June 19th, 2009

On Wednesday, June 10th, my manager went to an event for PKD research at NYU. One guest speaker was Dr. Irina Barash. Dr. Barash told everyone about the state of PKD research. She was terrific. Obviously pregnant, she was also obviously in very good spirits. She’s already been to three Walks for PKD, and will be there in Lower Manhattan on October 25th if her newborn allows. Three cheers for Dr. Barash!

The main attraction was NY Giants Offensive Coordinator Kevin Gilbride, who was kind enough to lend his time to become the TriState Walk for PKD’s Honorary Chairman. The Giants wrote a nice article about his involvement, and my manager’s good friend, SI Senior Sportswriter Damon Hack, asked Gilbride a question that made it into a story he was working on:

Can Matt Ryan, Joe Flacco avoid the sophomore slump?

I’m just a kidney, so I don’t know much about the chances of Ryan or Flacco, but with support like this, the PKD Foundation will be able to avoid matching the greater economic slump.

PKD Foundation President Dan Larson was on hand to introduce Coach Gilbride, and after Gilbride talked about his family’s experience with PKD and his own experience with the Giants, the always-inspiring Leigh Reynolds, the PKD Foundation’s Director of Special Events, asked the audience, “How many of you know 20 people from whom you can raise $20?”

If enough people in the PKD community would ask 20 friends for $20 each, we’d have this disease cured in no time. — Kenny

Friday, February 13th, 2009

A man who extended the lives of millions of kidney patients has died. All of us who care about kidneys would do well to take a moment to honor him in our thoughts.

Sandra Blakesleee of the NY Times reports, “As a young physician at the University of Groningen in the Netherlands in 1938, Dr. Kolff watched a young man die a slow, agonizing death from temporary kidney failure. He reasoned that if he could find a way to remove the toxic waste products that build up in the blood of such patients, he could keep them alive until their kidneys rebounded.”

As he began experimenting, the Nazis invaded The Netherlands. To avoid working with Nazi sympathizers, he moved to a small hospital in a rural area, “set up Europe’s first blood bank,” and kept working on his kidney machine.

“The device was an exemplar of Rube Goldberg ingenuity. It consisted of 50 yards of sausage casing wrapped around a wooden drum set into a salt solution. The patient’s blood was drawn from a wrist artery and fed into the casings. The drum was rotated, removing impurities. To get the blood safely back into the patient, Dr. Kolff copied the design of a water-pump coupling used in Ford motor engines. Later he used orange juice cans and a clothes washing machine to build his apparatuses. The first 15 people placed on the machine died.”

But then they started living longer. At one point he used the machine on a woman whom kidney failure had put into a coma. She lasted on the machine a long time. Immediately upon coming out of the coma, she announced that she was going to divorce her husband — because he was against the Nazis, and she was for them. She lived another seven years.

Doctors can’t save only the nice ones ….

Today let us honor the great Willem Kolff. Oh, yeah — he also invented the artificial heart. And gave credit to his co-worker, Robert Jarvik.

Willem Kolff, Doctor Who Invented Kidney and Heart Machines, Dies at 97 (NY Times)

Not all good people die young. — Kenny