TV Interview - Our hope

Pat visited St. Louis in May. We were interviewed about Ride to Pikes Peak. Beyond our goal of enjoying ourselves and sharing the experience together we were asked what we hoped to accomplish through publicity, the internet, local events and the PKD Foundation. View the video here.

Checking on Ft. Bellefontaine

Matt, Zac and I rode to Fort Bellefontaine Sunday. It's an odd historic site. It's a St. Louis County Park but it is gated with security because the State of Missouri operates a youth home at the location.

Anyway, we checked out the historic site, the view from the bluffs and rode the August 3rd route. The ride to the Katy Trail is a mix of rolling hills and crowded commercial roads. What can you expect? We're not on a keelboat like Zebulon Pike! You can read a good fact sheet on the site by the St. Louis CVC.

By the way, friends are helping make August 3rd fun with a special events and a fiddle playing "America The Beautiful".

A wonderful Transplant Games!!

Pat has returned from the 2005 U.S. Transplant Games. She participated in the games with John Bergstresser. His brother, Matt, came along for fun. John is also a kidney transplant recipient. They stayed in the RV for the four day games.
Pat's bike training this Spring was rewarded with a gold medal in the 20k road race. John won a bronze medal in badmitten.
WAY TO GO MOM AND JOHN!

With a little help from my friends

RTPP takes time - not the training (which is fun) but all the other stuff. I got burned out earlier this year. Now friends (old and new) are offering all types of help and support. They share our hope that RTPP and more PKD awareness could make a difference for people and families living with PKD.

Wendy is an entrepreneur from Boulder, Colorado who read about RTPP in the Post-Dispatch. In the past month she has offered great advice, solicited in-kind support, contacted Colorado media and rallied her friends to make a generous donation. I'm excited to be one of the first people "avoiding the rust" in an element26 shirt. I snapped a photo with my running buds for Wendy's company website.

Another person is Mark Sauer. Mark and I talk running. Three months ago, when I mentioned RTPP to him at a Blues event he understood right away what I was doing and why. We've talked about it a few times and today we dug deeper into the plans. His donation and his confidence in the worthiness of the effort is a huge boost.

By the way, thanks Scooter, Dave, Tom, Frig, Duckie and Zac for interrupting our early morning run for the photo!

Eat Healthy

Last night was our monthly PKD meeting. On June 25th anyone who brings this flyer to Chevy's will have 15% of their bill donated to PKD. Thanks Ana for organizing it! John, the chapter president, reminded everyone to avoid the "saltiest" items from the "tex-mex" menu. If you have PKD, limiting sodium is one of few pro-active options to reduce blood pressure and hopefully slow the progression to renal failure and dialysis.

Sodium, one of the planet's oldest substances, may be the American diet's newest enemy. The American Medical Association is expected this week to call for a 50 percent reduction in sodium in processed foods and restaurant meals with the goal of reducing hypertension. - CHICAGO TRIBUNE, June 13, 2006

Cutting sodium/salt is a good idea for all Americans and one of a pitiful few pro-active options available to people with PKD. Medical research and better options are needed.

Interview MP3 Available

During the Memorial Day holiday Pat (mom) was in St. Louis visiting. On Tuesday a friend, Todd Shaak, took a publicity photo for us on the Eads bridge and we also did an interview.

Follow this link to listen to a 60 second MP3 from the interview where we discuss increasing awareness and motivating people to become organ donors.

In My Generation?

My uncle, Bobby Florine, had PKD. He died while on dialysis. He was an Air Force pilot in WW2. A recently issued Franklin Mint replica of his “8 Ball” P-38 aircraft commemmorates his tour of duty in Europe. He also represented the Florine name proudly as an Iowa farmer. As my mother said, “he contributed to society”.

I saw his family and my aunt Frances Florine recently. My cousins traveled long and far to celebrate her 83rd birthday. Like many Americans they are spread around the US. Like many Americans PKD runs in the family.

About 600,000 Americans have PKD. An increase in blood pressure is an early symptom. For most people, cysts and fluid builds up in the kidneys and the abdomen swells due to the enlarged kidneys. Eventually dialysis or a kidney transplant is the only life-saving option as the kidneys completely fail.

Some of my cousins have PKD and it's symptoms. One cousin teaches kindergarten. One day during a quiet moment a child asked why her belly was so big. After the initial tension of the awkward question she decided to honestly and carefully describe for the children what PKD was doing to her kidneys and why it had caused her belly to swell.

It takes a lot of strength to describe how PKD is ruining your kidneys to a classroom of children while wishing there was something - anything you could do to stop it. It takes personal strength to stay positive. But that’s life to families with PKD.

In my grandmother's generation PKD was a 100% killer. Dialysis and organ donation gave life to a few in my mother's generation. I pray that in my generation an effective treatment would offer a full and free life. If it does not come in my generation we need to appreciate the personal strength and challenges of those with PKD and help them if we can.

St. Louis Chapter says "you are not alone"

The St. Louis PKD Chapter has been so helpful to me I encourage anyone to join up. Local PKD chapter meetings to share info and discuss activites occur monthly in Clayton. The chapter organizes the Walk for PKD, hosts annual seminar, other events and publishes a newsletter.

To receive meeting notices and newsletter send your name address, phone # and email address to: PKD Foundation/St. Louis, C/O John David, 7520 Wydown 1w, Clayton, MO 63105, 314-863-1230 or john.david@sbcglobal.net

News and Media Links

---> VIDEO <---
August 14 KOAA Colorado Springs News Story
August 3 Live Interview at Fort Bellefontaine FOX2
August 3 FOX2 Story Thank you FOX2!
May 30 TV interview - Why? and What hopes for RTPP?
Feb 24 Part One: PKD and the Florine family
Feb 24 Part Two: Pat is diagnosed with PKD
Feb 24 Part Three: Dialysis then a transplant
Feb 24 Part Four: Eight years after
Feb 24 Part Five: Work with the blind and visually impaired
Feb 24 Part Six: For PKD research and organ donation

---> NEWS - WEB - PRINT <---
Story from PKD Foundation
TrailRunner Magazine photo of 2005 Pikes Peak Marathon
Story from Zebulon Pike website
JPG or PDF of the May 13 Post-Dispatch story
JPG of the May 2006 PKD Magazine story
August 2006 Runners World
Press Release from Missouri Tourism - July 19
July 31 Feature - Colorado Springs Gazette
Aug 3, Lake Sun Leader, Cover Page!
August 2, Kansas City Star

---> RADIO INTERVIEWS - MP3 <---
July 30 KMOX interview with Bill Reker
July 30 KMOX interview with Monica Adams (a longer conversation)
August 2 WIL Cornbread Show Interview
August 3 KLOU David Craig Show Interview

---> PRESS KIT AND SCHEDULE <---
Press Kit for download
PDF with final mileage and overnights for the route

Zebulon Pike gets "national" press

CNN.com posted a story about the 200th Anniversary of Pike's expedition. The story has a link to zebulonpike.org which features RTPP on the home page. Here's excerpts from CNN.com: "Pikes Peak is an American icon," said Carol Keenness, of the Colorado Springs Pioneers Museum. "Everybody has heard of Pikes Peak."

"(Pike's) not the first guy to be in Colorado," said Clive Siegle, manager of the Santa Fe Trail Association, which is coordinating bicentennial activities. "But he becomes, if you will, the first tour guide."