Memorial Day

It's the last day of a St. Louis visit by mom. We worked on RTPP and had fun too. Who better than Grandma to teach a kid how to play croquet? Pat's next 6 weeks are busy with the US Transplant Games, traveling to Norway with her nieces (following Scandinavian roots) and getting prepared for 3 weeks of RV travel. I want to give a big thank you to my neighbors Curt and Mary Anne who are avid RV travelers. They recommended a few roads and campsites and graciously donated a pair of extra wide mirrors for the Blazer. Plus they made a cash donation to the PKD Foundation.

Today marks the date 16 years since my father passed away from colon cancer. We miss you dad!

Team Pokorny + 1

Last month when our friend Bill Wrede offered "I’ll do what I can to assist you in your quest" he meant it! He booked a couple one-way flights and will join us in Kansas City and continue to Colorado Springs.

Bill was a student of my father at Concordia Seminary and a frequent guest at our home for dinner and visiting. He is a pastor for deaf Lutheran congregations in New York.

Thanks Bill! Look for the big trailer outside baggage claim in KC. We're gonna have some fun!!

Friends join the RTPP

When I told my friends at DAMY Media about Ride To Pike Peak they "got it". They could see the potential I see and they volunteered to help. Their marketing agency has great intuition. Today Dave, Amy and Annie and I talked about possibilities. I'm grateful for their insights. We're going to work right away with a "to do" list for the next week.

Our peloton is growing quickly
Today one of my running and cycling buddies, Scott, tightened up his plans to ride across Missouri. He'll join the ride in Hermann and ride along to Kansas. He's training for an Ironman. Another friend, Tim, is also riding to Kansas and others are riding various stages.

PKD Progress magazine

PKD Progress Magazine is sent to PKD patients, physicians and research scientists. Friends and contributors to the PKD Foundation also receive the high-quality glossy magazine. The Summer 2006 issue arrived today and on page 15 is the Ride To Pikes Peak. Kara Cowie of the PKD Foundation wrote an excellent summary and a photograph of three generations of Pokornys from the 2001 Indianapolis Half Marathon was included.

A week of training

This was the kind of week I hope to repeat throughout June and July. Monday - Friday I alternated 2 hour spinning rides and running. I always end at 7:00am so I have time for breakfast with my son. I did two weight training sessions at lunch and I was able to get both a long run and a long ride in this weekend. 18 1/2 total hours for the week. It's a lot of time but I love it. I meet friends for the runs and the long ride. With the exception of the long bike ride I'm done before breakfast.

Mom's Day story published in St. Louis Post-Dispatch

Kathleen Nelson of the St. Louis Post-Dispatch wrote a feature about our plans to raise PKD awareness, support research and encourage organ donors. The story was published on Saturday before Mothers Day. Follow this story link or click on the image to the right to view the story as it appeared in Sports.

Bike Training

My main weekend ride is along the Mississippi River. It's scenic and mostly off roads. The trail crosses at the historic Chain of Rocks Bridge (old postcard photo right). A map of the route is on-line.

Let's be practical

Pat Pokorny volunteers at Conner Prairie. The "living history museum" in Indianapolis is incredible. Go to their website. Pat, who grew up on an Iowa farm, has been working with the livestock of the recreated frontier community. Here is a photo of her and "Blue". Thank you Conner Prairie staff for the photo.

Indulge my practical nature for a second and think about these three women.

1. a woman active all her life but becoming isolated and burdened by exhaustion and hours of weekly dialysis
2. a woman with a kidney tranplant who continues for seven years her full-time job helping the blind. She retires and continues volunteering and inspiring others
3. a woman (in the future) who uses new treatments to prevent cysts from forming in her kidneys. She has options to greatly reduce or even eliminate any chance of passing PKD to her children.

I think about those three women and I find it a pretty compelling proposition that the U.S. would benefit from more registered organ and tissue donors and from developing an effective treatment for PKD.

To learn about the first two women view the interview with Pat or read Pat's PKD story.

STL PKD

Tonight my son and I attended the St. Louis PKD chapter meeting. I reported on RTPP progress and talked about my hopes and "best case scenarios" for the effort. Thank you all for the encouragement and support!! In the end, we added a bike rider for a stage of RTPP and raised some money.

And there was the first signing of the flag we're going to fly at Pikes Peak. We hope to fill it with the initials of those living with PKD or those who are no longer with us. My son signed "grandma".

Promoted by Pike Bicentennial Page

RTPP is a cover story at the Zebulon Pike Bicentennial Page. The well organized bicentennial group profiled our effort under the headline "Pike Enduro to Retrace Route and Raise Awareness". Our ride is unique because it covers such a vast part of Pike's Expedition route. RTPP is also the only scheduled event in St. Louis.

Visit the Pike Page for a lot of great information about the Zebulon Pike Expedition. For a PDF of the feature and profile go to the news and media links post.

Training for the Transplant Games

"I'm participating, not competing," even so she'll be ready.
"Biking on the Monon Trail in Indianapolis has not yet reached the 20 miles mark. 12 to 14 is about all the farther I have gotten. In June I have signed up for a ride in Brownsburg that is twenty miles so I figure that will be a good test for me."
The Transplant Games are June 16 - 21 in Kentucky.

The Iowa born gardener has been busy too. She gets so much variety out of a 10 x 10 garden.
"The garden is almost complete. All things in-- but the beans. If it does not rain tonight I will do that tomorrow."

Who wants to know?

This week I traded e-mails with Robin Marantz Henig. She has written essays and books about the ethical and philosophical aspects of today's "medical miracles". Her most recent book is Pandora's Baby.

Robin wrote about PKD in an essay for USA Today. She shares how PKD is in her family and the individual and personal choice she made about genetic tests to identify her PKD status.

Her essay illuminates the experience of families with PKD. Many people can live active lives with PKD but can do little to prevent ultimate kidney failure. If your parents had PKD would you want to know if you had it?

Myself, I didn't want to know. But I did find out. A couple kidney stones in my early 30s required a kidney scan which showed healthy kidneys.

In the Blog-o-sphere

After visiting Scott Dunlap's trail running blog I realized I haven't offered syndication and e-mail features that people like with blogs. So now I did some research and added them. They're on the left margin.

By the way, thanks everybody for your reply e-mails about the coffee blog I e-mailed to friends.

Thoughful Posts

If you only knew the half of it

Living with PKD - Let's find a cure in My Generation

A practical view for supporting research and organ donation

Would you want to know if you had PKD?

Probability of having PKD - the chances of making a difference

Remembering my father

A Gift - an Obligation - a Privilege

Why haven't you heard of PKD?

Getting up for life

Degrees of separation

Can you imagine why anyone would do this?

Finding your path, finding hints from God

Chances are

Last week I e-mailed my "coffee with dad" post to family, friends and contacts. It became an announcement of the effort to a lot of people I know. On Sunday at church I talked with Barb who's aunt has PKD - it runs in her family. My friend Jeff, who organizes the 180 Energy Runners (and our 2005 Pikes Peak trip - see photo), introduced me to his co-worker, Bob, who recently was diagnosed with PKD.

The primary form of PKD affects about 1-in-400 adults. The other form, ARPKD is less common, affecting 1-in-10,000 at a far younger age, including newborns, infants and children.

How many of those 400 adults are aware of PKD? How many are registered as organ donors? --- In a broader philosophical sense, how many of those 400 people actually believe they can make a difference through their actions? --- Not enough. --- That's a problem. --- People (especially in America) have the opportunity to make a difference. It's not easy but it's opportunity. Now stepping off my soapbox and back into my running shoes.

Rockies Game - August 17

Our publicity efforts include events at MLB games in St. Louis (Aug 2) , Kansas City (Aug 6) and Denver (Aug 17). On-field recognition before the game is planned in St. Louis and Kansas City but I just found out that the Denver appearance might be the most effective to raise PKD awareness.

The Rockies TV network, FSN Rocky Mountain, has invited us to visit the with the broadcasters during early innings of their telecast that day (August 17). We'll share the story of our ride to Colorado and the PKD folks we met along the way. We'll encourage viewers to register as organ donors and support research for a PKD cure. Plus we'll get to talk about the final conclusion of RTPP, the Pikes Peak Marathon on August 20th.