Archive for the ‘genetic information’ 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, 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!

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

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

Monday, February 25th, 2008

Important NY Times story about widespread fear of genetic discrimination. Many people who have PKD worry about this. They avoid talking about it, avoid testing their kids for it, and avoid the studies that could someday save them — and could someday save the U.S. more than $2 billion a year.

So much great research is being done on so many diseases — but if people are afraid to join the studies, a lot of that research will be wasted.

Some 80 people who care about PKD are going to Washington, D.C., next week to ask their congresspersons to pass GINA, the Genetic Information Non-Discrimination Act. My manager will be among them. Please add your voice to ours.
— Kenny