Ride to Pikes Peak

Original Story - FOX2 News

2007-02-03T23:42:00.000-06:00

David Eckstein helped us

2006-11-02T14:23:00.000-06:00

Congratulations to World Series MVP David Eckstein. The night before we left, August 3, he greeted the St. Louis PKD Foundation at batting practice before the game. His work and contributions for organ donation are tremendous.

Post-Dispatch (Sep 2)

2006-09-03T20:31:00.000-05:00

Visit the St. Louis Post-Dispatch website or click the image to the right to read the article written by Kathleen Nelson. Thanks Stephanie for the great photo they used with the article.

Colorado Springs Gazette reports from the finish line

2006-08-23T10:43:00.000-05:00

Milo F. Bryant a columnist for the Colorado Springs Gazette interviewed mother and I at the finish line. His story is a great wrap-up. Family’s journey is for good cause. Also mentioned in his blog at blogspot.com

Thanks everyone for your prayers and calls. Mother, Clayton and I are doing well after our auto accident returning to St. Louis.

Opportunities in life are given. It's up to us to accept them. We are so glad we went after this one. It was awesome!

Success

2006-08-20T14:21:00.000-05:00

An incredible day on the mountain for PKD, for organ donation and for St. Louis. My friend and running bud Zac Fruedenberg took 3rd in an extremely competitive race. He ran a truly brilliant race and his success is awesome! My own race was a thrill. I ran strong up the hill, paced myself down the hill and finished in 4:46. I finished 22nd overall. But hooray! I got beat by two girls so when they seperate the results I get 20th.

There are a couple pictures before and after.

Mom and I want to thank everyone for supporting our dream of sharing this together and making a difference for PKD and organ donation. We wouldn't be here without you.

AMEN!

Denver

2006-08-18T15:11:00.000-05:00

On Thursday, FOX31 "Good Day Colorado" invited us on-air. FSN Rocky Mountain is going to produce a feature about our efforts for PKD and organ donation. Lots of new photos posted. We raised the PKD flag at the Rockies game. Today and tomorrow we'll have a booth at the Pikes Peak Marathon. The other 180 runners have arrived from St. Louis.

Yesterday Bill Wrede had to fly home. Thanks Bill for joining the team for these 10 days. I needed your help more than I realized. It was so much fun with you here.

“If you only knew the half of it.”

2006-08-16T19:42:00.000-05:00

Have you ever discovered that “what you thought you knew” was just the surface layer of understanding?

When my “eyes” were opened to how PKD and organ donation affected my own family, I was stunned. As a child or teen or young man, I had no idea of my mother’s feelings about having PKD. I couldn’t appreciate her experience of losing her mother, sisters and brothers to the disease, and wondering how PKD would affect her children. And, even though I was there, I didn’t fully appreciate the incredible gift the day another man’s kidney began purifying my mother’s blood.

When I began talking to people about PKD and organ donation my eyes were opened again. Beyond the weather, sports, movies and the price of gas – beyond the superficial - people are compassionate. People share stories of PKD, celebrate their loved ones and talk about the impact of organ donation. And always with organ donation there is happiness. Joy and comfort in the stories of loved ones who gave. Warmth and gratitude for those who have received.

Today I was blessed to talk with Meghan and Zanthe about their sister Brie. Brie lived with joy, happiness and a fatal heart condition. Brie registered as an organ donor. When she was sixteen and her heart failed Brie gave life and sight to others. She gave inspiration to her sisters. She made a difference in this world.

Brie’s family operates the Manitou Springs Wellness Center. Meghan is helping me get the road soreness out of my quads so I can put some trail soreness in them on Sunday. Thank you for letting me write about your sister.

PKD to the summit

2006-08-15T15:51:00.000-05:00

We took the cog railway to Pikes Peak summit and raised our flag signed with the names of people with PKD. So great to be there.

A story about PKD and the ride which aired on KOAA in Colorado Springs is on-line. Watch the story here. On Thursday we'll get a chance to talk about PKD and organ donation during the FOX13 Denver morning news and the FSN Rocky Mountain Rockies telecast.

Hooray!

2006-08-14T17:00:00.000-05:00

We pulled into Manitou Springs this afternoon. Today's mileage 53. Total 990 from Fort Bellefontaine. Feel really good. Tired but excited about the marathon on Sunday. I am so grateful for this opportunity with Mom. THAT IS what the bigger picture is all about. Don't waste opportunities. Help others through organ donation. Appreciate the challenges others may be facing, especially life-threatening diseases with no outward signs like PKD. Help if you can.

Thanks everyone.

In sight of Pikes Peak

2006-08-12T16:38:00.000-05:00

We're camped in sight of Pikes Peak. We ended just ahead of a thunderstom which is now raining on the KOA-Pueblo campground. Rest on Sunday, finish up on Monday. 168 KM (about 105 miles) today. About 935 miles so far.

Until tonight, I had not really "stepped back" to look at a big map or think about what has happened since August 3rd. We've been remembering funny things but we get the days mixed up and can't remember what day it happened. Check the photo gallery.

We need this

2006-08-11T20:07:00.000-05:00

Tonight I am so grateful. What a privilege mom and I have been given to be supported by friends in our effort to raise PKD awareness, fund research and encourage organ donors. I thought of this while riding and have been eager to type it. Mom and I received these two emails. Following are excerpts:

“While my family’s struggle with this disease has been a continuous one, my personal fight has only recently begun. I really haven’t shared my diagnosis with many people, but I wanted you to know that I was touched by what you've done! You've reminded me that I don’t have to fight this battle alone and that there are so many options and so much growing support for those affected!”

“Just wanted you to know I have signed the back of my license for organ donations.”

America needs this. Families and people with PKD need to know that America appreciates what they are battling. And America, you need to help by becoming organ donors to save the lives of your child’s teacher, your favorite waitress and your friends.

MISC: 245 km today. We’re a day ahead of schedule and 20 miles west of Lamar. Thanks to Max Stephenson who bought tubes and a patch kit last night and handed it off in Garden City this morning. I used one this afternoon. New pictures in photo gallery.

Take today away

2006-08-10T15:20:00.000-05:00

Rode 122km on Wednesday. Got to Larned at 1:15. The temp was 105 with 14mph SW headwind. There was nothing between Hutchinson and Larned. No 7-11, no gas, nothing. If not for mom I couldn’t have made it. That’s why this is OUR Ride to Pikes Peak. We’re a team. I would not be here without mom. Today could not have happened except for a man in Indiana who became an organ donor. Take today away. The day he signed up as an organ donor was a day that saved the lives of at least 4 or 5 people including my mother.

Stop .. take a second .. imagine the ways that man’s signature changed the lives of donor recipients, their families, their neighbors, their co-workers, society.

ADDENDUM
Thursday rode 132km to Cimmaron. Put a few extra miles “in the bank.” Colorado border is getting close. -- Lots of new pictures from Wednesday and Thursday. -- In Larned we met David Clapsaddle, a Zebulon Pike expert, who has a Spanish artifact discovered at a site where the Spanish searched for Pike's group. -- Called Cornbread show on WIL. Thanks CB and Pat for putting PKD out there. -- Will get silly with Bill and mom in historic, tourist Dodge City. Cookie gets a rest as we go out for steak.

"People of the South Wind"

2006-08-08T17:02:00.000-05:00

Tip: Remember obscure knowledge so you can blog it.
Kansas takes it's name from the Kaw or Kansa Indian tribe which means "People of the South Wind". It was blowing today and I was eager to turn north after Wichita and enjoy the wind at my back. Still ahead of schedule, made it to Hutchinson and are camping at Melody Acres RV Park. Rode 142km today and I guess we're about halfway.

Wi-Fi at the campsite. Much new at photo gallery and NEWS links. Thanks Patrick and Annie for getting the KLOU interview and AP wire story.

MISC: Thank you JC and KHTS for morning segment for PKD. Thanks everyone for guestbook and donating to PKD Foundation at the link to the left. Mom's camp nickname is now "Cookie": Good eating! Riding at sunrise tomorrow to beat the 100+ forecast.

Flat Kansas is fine

2006-08-07T16:43:00.000-05:00

Great day. Did 174km today and made great time. Flat, big ring all day long. Rode Hwy54 across Kansas and was hoping for El Dorado when my second flat tire of the day, my botched fix (I pinched the replacement tube), and a coming thunderstorm conspired against us. Good enough. We're ahead of schedule and having a lot of fun. Thank God for the good weather. You can manage the heat with fluids but you hate riding into a headwind.

While riding I thought about the PKD story shared by a friend. Her college roomate has PKD and is facing renal failure. She discovered it during college. Her mother had not yet told her. The diagnosis fractured and damaged her relationship with her mother for many years. --- There is no treatment and no cure for PKD. --- Perhaps the mother hoped her daughter was spared and perhaps she wanted her daughter to not worry about PKD when there was little she could do. I don't know. What I do know is that PKD attacks families. It attacks your opportunity to have a family and live with them. I thank God that my mother is here because of an organ donor.

Royal Treatment

2006-08-06T22:47:00.000-05:00

Sunday, we met the staff and volunteers of the PKD Foundation (based in Kansas City) before the Royals game, a tent and food and visiting. They said people have called and emailed with enthusiasm about what's happening. They loved the radio interviews which you can hear in the media links. As Jennifer said, "we got all the facts right."

After the "tailgate" we were invited on-field for a special presentation about PKD. We were on-stage in the media room as we waited to go on the field. What you can't see is the assembled media. Actually there weren't any! We were just fooling around. Seriously, it was a great thrill to be on the field in promotion of polycystic kidney disease (PKD) and now that our friend Bill Wrede has joined us, my son has returned to St. Louis and my friends have returned to work I'm ready to ride west. See the Photo Gallery.

Thank you for your prayers, comments in the guestbook and contributions. Mom and I thank God for his blessings and for the opportunity we have been given.

One state down, one and a half to go

2006-08-05T19:02:00.000-05:00

We're not in Missouri anymore. With my friends Tim, Matt and Scott we made it to Kansas late Saturday afternoon. Even with the heat we put the hammer down when we realized we were within 10 miles of being done. We took a group photo with everyone's families before wrapping up our group ride across Missouri.

Camped at Four Rivers Conservation Area, the spot where Zebulon Pike arrived on August 19, 1806 and stayed until September at the Osage Indian's village. I drank a coffee to Lt. Pike Sunday morning. Check the photo album for pictures of all.

FOX2 story

2006-08-04T23:15:00.000-05:00

FOX2 in St. Louis has generously provided their August 3 story about mom and my efforts for PKD. The story can be viewed by following this weblink. Thank you Paul Schankman and the editors and photographers for seeing the story and helping us honor our family and those with PKD. My mother and I saw it for the first time tonight via Internet and are without words.

Pike was here

2006-08-04T21:55:00.000-05:00

200 years ago today Pike entered the area that is now the Lake of the Ozarks. His camp of August 4 and 5 is just above Bagnell Dam, near the village of Lake Ozark. On August 6 Pike passed around Horseshoe Bend and headed east to make Shawnee Bend. His Journal entry follows. 4th August, Monday: We embarked early and continued on for some time, not being able to find a suitable place to dry our things but at length stopped on the east shore. --- The navigation had become very difficult from the rapidity of the current, occasioned by the rise of the water, which rose one foot in an hour. Killed two deer. Distance 10 miles. Rainy.

Caught up to Zeb

2006-08-04T20:49:00.000-05:00

We're at Lake of the Ozarks on the date 200yrs ago when Zebulon Pike arrived at the same spot. We're following his route on the Missouri, Osage and Arkansas Rivers. We drank a toast to Zeb at dinner.

The Lake of Ozarks is the best! Jackie Janus works on publicity for the Lake and since I first traded e-mails with her last week she has worked on promoting PKD and helping our effort. She helped line up TV and newspaper coverage including a front page story at the Lake Sun Leader. It's in News Links also. We met at the dam and after a cookie reception at Willmore Lodge she even helped us toast Zeb Pike! We love the Lake!!!

My cousin Angie whose family has PKD surprised us at the cookie reception. Feels great to be doing something, trying something to make a difference for families with PKD. We talked about House Bill 1227 which is struggling in the US House of Representatives. The bill protects from discrimination in health care and employment after genetic testing for disease.

Sunrise in wine-town

2006-08-04T06:40:00.000-05:00

It's beautiful this morning. Cool and refreshing waking in the Hermann City Park. Riding to the 19 bridge to meet our group which includes Mark Livesay from Ultramax Events. There's so many great pictures from the last couple days. DAMY put a bunch in the Photo gallery for me yesterday. I hope to get more up tonight.

The sister of the RV owner next to ours is alive because of a kidney transplant. Are you an organ donor?

What an opportunity we've been given

2006-08-03T22:41:00.000-05:00

With the help of so many friends (many you see in Photo Gallery) we are trying to make a difference for PKD. What we've accomplished is because others believe in what we're trying to do. This morning as we stood on the Missouri River bluff it was overwhelming to think about the things that people have done to help us succeed, their faith and trust that we should go for it. We're very grateful. It was chaotic with FOX2 live coverage this morning and I didn't get to thank our Vicar, Jason, properly for a wonderful prayer. With the hope of God's blessing we attempt this.

Mom is an awesome spokesperson for living with PKD. Just listen to an interview or watch a video clip in the NEWS Coverage. Her witness to the impact of PKD on the lives of Americans and her example of the courage of people to "live their lives" despite the diagnosis.

On July 15 Zebulon Pike wrote We sailed from the landing at Belle Fontaine, about 3 o’clock in two boats. ... Distance 6 miles. I'm glad we're making better time.

Off we go

2006-08-03T22:28:00.001-05:00

What a fortunate day. We had great weather to ride in and great people to be with. Friends Matt, Glenn and Tim rode along to Rams Training Camp. Then off to the Katy trail where we met Ron Walkenbach. Ron is a transplant recipient, corneal transplants saved the vision of both his eyes. We suffered a couple flat tires on the way but arrived safely in Hermann for Wiener Schnitzel. Excellent food for cycling.

We're camping at the Hermann City Park which has a public pool. Enjoyed the swim with Clayton. Travelled about 100 when it was all done.

What a night for PKD

2006-08-03T00:52:00.000-05:00

An incredible night for PKD at the Cards game. Bringing 40 folks from the St. Louis PKD Chapter on the field, our organ Donor Drive with Mid-America Transplant Services at Hrabosky's ballpark saloon, the opportunity to talk about PKD in the FSN Midwest Cardinals telecast and the chance to stand with mom on the field and smile that tomorrow we leave. I can't sleep.

Ride to Pikes Peak TWO

Jul 30, 2006 - 17 Photos

Cornbread cares

2006-08-02T22:42:00.000-05:00

Cornbread morning show on WIL gave us a great interview and you can hear it now at the NEWS Links section. Tonight James Perry and WIL got our organ donor drive at the Cardinals game the promotion it needed.

People are learning about PKD. People are learning to appreciate their co-workers and neighbors who might have PKD or even other kidney diseases. My neighbor Dave just walked up as we're packing the RV to wish us luck and say that his brother-in-law's family is facing kidney disease (not PKD). It's a small world. What you give comes right back .. right away.

Generous people

2006-08-02T13:26:00.000-05:00

As my mom said in the TV interview recorded in May, Americans are generous people. That's true. Over $6,000 before we leave St. Louis. Thank you all.

A difference can be made in so many ways. Raising money, raising PKD awareness, recruiting organ donors, helping Congress pass genetic disease anti-discrimination legislation this session. With your help we might succeed. If we can encourage those families, those people with PKD that their struggles and their strength and courage to LIVE THEIR LIVES are appreciated. I want to see that happen!

Anticipation

2006-08-01T22:39:00.000-05:00

Great article today in Colorado Springs Gazette. Read it via the link at the NEWS Coverage page.
We're packing. Talking strategy for organizing our lives and the RV. We have a coffee maker!
Tomorrow's our organ donor drive with MTS and WIL before the Cardinals game. And there's on field stuff at the game.
Friends from Big Shark Racing are helping form the peleton from Fort Bellefontaine. They're bringing the Big Shark van to shuttle everyone back. Thanks!

RV tells the PKD story

2006-08-01T10:36:00.000-05:00

The Photo Album has pictures of our newly wrapped RV trailer. It looks great. We're hoping that it helps us educate Americans about PKD and encourage them to become organ donors. On Wednesday we'll use it at the organ donor drive before the Cardinals game. Thanks to Jeff Moore, Commerce Color, Original Graffiti and the generous donors who paid for it.

KMOX

2006-07-30T22:43:00.000-05:00

Mother and I did our KMOX interview this afternoon and it went great. We had a brief interview in the morning and 20 minute interview at 12:30. We were able to talk about PKD and the need for organ donors and promote the organ donor drive for Wednesday. Hopefully I'll be able to post an MP3 soon. Go to the photo album for a picture.

My last trip on Route 66

2006-07-29T17:30:00.000-05:00

I rode my 100 mile route one more time from Kirkwood to downtown and up the Mississippi to Alton crossing on the old Route 66 Chain of Rocks Bridge. Link to route map here. So sad to discover a favorite landmark neon sign of old Route 66 was wrecked by the massive STL storm.

Less than a week!! Excited to leave. Mom has arrived with the RV and we'll enjoy worshiping together at tomorrow.

Organ Donor Drive - Aug 2 - Cards game

2006-07-28T15:10:00.000-05:00

Mid-America Transplant (MTS) services and WIL 92.3FM will help us with an Organ Donor Drive before Wednesday's Cardinals game. We'll set up our PKD RV trailer and WIL Cornbread truck near Hrabosky's Ballpark Saloon where MTS will answer questions and help people complete forms to become a registered organ donor in
Missouri. Only 34% of licensed drivers are enrolled in the MO organ donor registry! We need more Missouri citizens to sign up and save the lives of our neighbors, our co-workers and our families.

Cingular Wireless

2006-07-28T14:19:00.000-05:00

Thank you Cingular Wireless! A friend at Cingular will provide two phones and a wireless internet card so we can stay in touch with each other and this blog. Thank you Cingular!

What a blessing

2006-07-27T22:31:00.000-05:00

Less than a week away and the generosity and support of everyone helping to make this happen for PKD is amazing. The friendly business and tourism folks in Lake of the Ozarks have reached out to help us make our stop at Bagnell and the Bagnell Dam special. We might even have a mini reception at the historic Willmore Lodge after we arrive on Friday.

Element26 has been a great booster of our plans and provided shirts which I was able to share with our Thursday morning runner group. Two of the guys near me on the left, Scott and Tim (turned to show the shirt design) are biking with me across Missouri.

With a few good friends

2006-07-25T12:41:00.000-05:00

Once again I feel compelled to write about how great the encouragement and help of our friends is. My mother and I have received assistance, encouragement, gifts, donations and so much more. Our friends, the Busse family, posted a note in the guestbook and funded PKD research at our PKD Foundation on-line donation. The photo is from April when I stayed at their house before the Boston Marathon.

Thank you everyone. There is much we can accomplish together. We can encourage families and people with PKD. We can appreciate their strength. We can raise funds for research. We can support proposed national legislation to prevent discrimination in benefits and employment. We can make a difference for PKD.

August 3rd route

2006-07-21T13:14:00.000-05:00

Last weekend Matt and I found a better route for our send off. A map is on-line --> August 3rd - Fort Bellefontaine to St. Charles The new route uses better roads to get to Rams Park and our 9:00am visit with the St. Louis Rams.

After Charles Pool plays America the Beautiful on fiddle we'll leave at 7:30am and ride at 18 - 20 mph so that we can visit St. Louis Rams Training Camp at 9:00am.

Pikes Peak PKD Special

2006-07-19T21:24:00.000-05:00

A 24 foot RV should make a good mobile billboard for PKD. We'll find out. DAMY Media designed it and Jeff Moore/Commerce Color printed and will install it. My friends Mark Sauer, Element26, Kay O'Neill and folks from the STL PKD chapter paid for it.

As we travel to Colorado the RV wrap will help us recognize the strength of those living with PKD and encourage support for research to find a cure.

Our Ordinary Life

2006-07-19T13:44:00.000-05:00

My son's tonsils were removed yesterday and my wife and I are alternating caring for him at home and working. On Friday I take our dog to be put to sleep. Moles dig up our yard, the utility bills are high, uncomfortable heat, too many "to-dos". In Indianapolis, the roofing company is fixing mom's hail damage. She's checking on some knee pain and pulling weeds out of the vegetables.

Well at least we've got vacation coming. Traveling, camping, visiting, biking to Manitou Springs and the Pikes Peak Marathon.

A new opportunity for us

2006-07-17T21:47:00.000-05:00

In an earlier post I noted that many people in families with PKD do not find out if they have the disease. There is the impact of confirming an incurable disease AND a diagnosis could affect their life or health insurance and might even affect their employment.

The PKD Foundation is working on preventing this type of discrimination based on genetic testing and information. A bill is making it's way through the US Senate and US House of Representatives. August and September are critical for progress. During RTPP we may have an opportunity to build support for this bill before the end of the legislative session.

Help from my friends - part 2

2006-07-17T21:10:00.000-05:00

I have good training partners. Friends who are up before 5am to bike 100 miles, friends who run when it's 10 degrees out and friends who invent crazy stunts like running 20 miles between four Starbucks and getting espresso shots at each.

Saturday a big group of us gathered to run the Chubb trail. Several are flying out to the Pikes Peak Marathon as part of the 180 Energy Runners.

From a guy who knows

2006-07-14T09:12:00.000-05:00

Jeff Bockhorn, my friend who organizes our 180 Energy Runners sent me this link to Pikes Peak champion Matt Carpenter's course description.
When it comes right down to it races are about their courses and this course is one of the most challenging in the world. The Barr Trail, on which the race take place, winds up the eastern face of 14,115 foot Pikes Peak. Starting in Manitou Springs right at 6,300 feet and gaining about 7,750 feet before reaching the turnaround point at around 14,050 feet, the Pikes Peak Marathon will redefine what you call running. In fact many runners spend a great deal of time walking.

New Photo Gallery

2006-07-12T21:29:00.000-05:00

I built a new photo album site which will should be easy to post to and update while we're on the road in August. Our New Photo Album

Love the Cardinals and Rams

2006-07-11T20:35:00.000-05:00

PKD pre-game events at the Cardinals v. Phillies game on August 2 are really looking fun. 50 people from our St. Louis PKD Chapter will visit the field before the game. Then during pre-game ceremonies PKD and the Ride to Pikes Peak will be recognized. Look for coverage on FSN Midwest.
On August 3rd, the first day of the ride starts at 7:30am. Riding out of Fort Bellefontaine we will stop at Rams Training Camp for a 20mile water stop. We are really grateful to the Rams for helping us raise awareness and funds for PKD.

Donate to PKD on-line

2006-07-05T15:46:00.000-05:00

Walk For PKD is a weekend of events around the country to raise money and awareness for PKD, September 16th and 17th. The Ride to Pikes Peak donation page uses the PKD Walk's on-line donation system. My mother and I would be honored if you donate to the PKD Foundation for PKD research on-line.

In Runners World

2006-07-03T10:00:00.000-05:00

Runner's World (Aug 2006) included the Ride to Pikes Peak in its "Real Runners" section on page 28. A paragraph about our ride/marathon and our hopes to raise awareness for Polycystic Kidney Disease and funds for PKD research was next to a photo from the 2005 St. Louis Marathon. Thank You Runner's World!

TV Interview - Our hope

2006-06-30T10:08:00.000-05:00

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

2006-06-27T11:33:00.000-05:00

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!!

2006-06-22T19:04:00.000-05:00

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

2006-06-15T18:02:00.000-05:00

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

2006-06-13T09:53:00.000-05:00

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

2006-06-09T16:17:00.000-05:00

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?

2006-06-06T16:58:00.000-05:00

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"

2006-06-01T20:20:00.000-05:00

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

2006-06-01T17:14:00.000-05:00

---> 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

2006-06-01T15:11:00.000-05:00

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."

Memorial Day

2006-05-30T17:35:00.000-05:00

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

2006-05-25T20:20:00.000-05:00

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

2006-05-23T20:49:00.000-05:00

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

2006-05-22T21:38:00.000-05:00

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

2006-05-21T20:38:00.000-05:00

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

2006-05-14T13:54:00.000-05:00

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

2006-05-12T17:52:00.000-05:00

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

2006-05-10T13:36:00.000-05:00

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.

a woman active all her life but becoming isolated and burdened by exhaustion and hours of weekly dialysis
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
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

2006-05-08T22:33:00.000-05:00

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

2006-05-05T11:07:00.000-05:00

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

2006-05-04T19:39:00.000-05:00

"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?

2006-05-04T17:22:00.000-05:00

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

2006-05-03T16:38:00.000-05:00

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

2006-05-02T10:34:00.000-05:00

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

2006-05-01T11:02:00.000-05:00

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

2006-05-01T09:42:00.000-05:00

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.

What You Can Do To Help

2006-04-30T22:44:00.000-05:00

Register as an organ donor
Notify your family of your intentions and notify the proper authority in your state.
Here are two websites that can help.
http://www.donatelife.net/ links and information based on where you live.
http://www.organdonor.gov/ a site with additional links and information.

Contribute to the PKD Foundation
The PKD Foundation is research oriented. Donations fund clinical trials to slow the growth of cysts, understand the disease and improve the lives of families afflicted by PKD.

Leave a comment on the guestbook.
If you think it relevant then post it! Sign "from annonymous" if you prefer.

Sign up for e-mail or a news feed
On the left margin are two links you can use to get e-mail of blog posts or to have them on your home page. Stay in touch.

Assist with Ride to Pikes Peak

Notify media contacts in your area of RTPP and this website to help spread the word.
We need places to park the RV trailer/and stay along the way - possibly motels or hotels
Local events along the way to bring more attention to PKD or organ donation

~~Cell phones, laptop computer and wireless internet.~~ (Many Thanks to Cingular Wireless and FOX Sports Net (my employer) for the computer)
~~A sign company to print adhesive decals for the trailer to promote PKD and RTPP~~ ( Many Thanks to Commerce Color and Jeff Moore)
A sponsor for gifts to volunteers and people who come out to support us. (just a rough idea at this point, I'm checking a couple things out such as armbands or headbands or bandanas with PKD artwork).
More to be determined. (check this space)

A dark roasted toast to dad

2006-04-25T22:42:00.000-05:00

Today marked an annual shift in my morning ritual, a shift to iced coffee. The temps are warmer and a mug of coffee would make me sweat so instead I brew coffee super-strong, pour it on ice and enjoy. It reminds me of my dad.

My dad relished and celebrated rituals and traditions especially those around meals. One of his favorite dinners was cheese fondue. He would purchase the special wine and cheese only available at a German imported food store. There was a specific type of bread sliced in small cubes for dipping. We had a sterno heated cooking pot and a set of special forks. We often had guests at our table for cheese fondue. The house rule was if your bread fell in the pot you had to kiss your neighbor. My father loved the rituals of cheese fondue more than how it tasted. I’m sure of it.

The British have “high tea”. The Japanese have green tea. But dad was from New York City and he loved coffee. After dinner and before dessert my brother, my sister or I were assigned to the wall-mounted Arcade 25 coffee grinder for “20 cranks” of the handle. Boiling water was poured over the fresh grinds in a Melitta filter, which dripped into a special thermos. My father showed me how to scrape the sides of the filter as it drained so the grinds could steep and brew more completely. Even though we kids didn’t drink coffee we were part of the ceremony and we felt connected.

Dad was a Lutheran pastor and he loved to get people excited about worship, especially at Easter. He had an annual ritual for Good Friday. After leading mid-day services he would shave off his goatee or cut short his hair. One Good Friday in the 1970s he left the barber shop with an afro perm. Imagine the smiles in church that Easter Sunday! Two weeks ago I celebrated my dad with my own Good Friday trip to the barber. I took a couple inches of winter hair off my head before competing in the Boston Marathon and to get ready for bike training in the St. Louis heat.

Dad’s celebrated rituals are some of my favorite memories of him. I’m proud to share my dad’s fondness for ritual and his love of coffee. I celebrate every morning.

David's father, Daniel Pokorny, was a Lutheran minister for the deaf. He was the chaplain at Gallaudet University in Washington, D.C. and a professor at Concordia Seminary in Clayton, Missouri.

Momentum

2006-04-24T15:50:00.000-05:00

The PKD Foundation is featuring RTPP in the events section of their website. Kara of the PKD Foundation interviewed us and wrote a story that is at www.pkdcure.org.

The alumni magazine of Northwestern University is considering the story and might incorporate news about the PKD research they conduct. I graduated NU in 1989.

For more information about Pat Pokorny's life and the experience of having PKD and being in a family afflicted by PKD read Pat's PKD story in a blog posting here.

Photo Gallery

2006-04-23T18:24:00.001-05:00

Pat and David in St. Louis

Pat and her grandson Clayton.

Pat after the 2001 Indianapolis Half Marathon with David and her two grandkids, Clayton and Andrew. See the "Go Grandma Go!" shirts.

Pat on her 2005 trip to view the polar bears. Since her kidney transplant in 1998 Pat and her nieces, Christine and Collete, have travelled to Peru, Galapagos Islands, and Churchill.

The Pikes Peak Park Plaza, Pat's RV trailer. Mom bought the trailer for RTPP, for her own travels and to fulfill a goal she set during dialysis. She created a list of things she would do if given a kidney transplant.

David after 2006 Boston Marathon. Nice shirt!!

Thursday 5:45 a.m. Forest Park runners - Nice element26 shirt!

Pat volunteers to help with livestock at Conner Prairie. Here with "Blue".

Pat's three children, David, Elizabeth and Philip holding the New York City fire helmet of our paternal grandfather, Harry Pokorny

The Florine family, in the 1940s. Among Pat's parents and brothers and sisters pictured 7 were afflicted with PKD.

100 miles

2006-04-23T17:02:00.000-05:00

With better weather I can bike outdoors. Today was my first ride of the season and I wanted to see how effective the spinning in my basement has been so I got up at dawn and rode from my house to the Arch, up the riverfront trail over into Illinois and up to Alton and back. 100 miles.
Here's my report: I forgot how long it takes and I didn't bring enough food (I had to stop for a Snickers and Gatorade), a little soreness in my neck, the bike worked great, I'm excited for RTPP.

Interview segments posted

2006-04-19T22:33:00.000-05:00

My friends John, Kerry and Patrick helped me create and post these short segments of an interview mother and I taped in February. The files are set up for Windows Media Player streaming.

Part One: PKD and the Florine family
The first diagnosis, the loss of her mother and the impact on her brothers and sisters

Part Two: Pat is diagnosed with PKD
Being tested before having kids, dealing with the diagnosis, the tendency towards denial and the unbelievable comments of a medical student

Part Three: Dialysis then a transplant
Dialysis experience, the transplant list, the donor and others who benefited, the donor was a perfect match “it was as though he were like my son”

Part Four: Eight years after
A list of goals written in hope of a kidney transplant, what she’s accomplished, she monitors her health and volunteers for organ transplant awareness

Part Five: Work with the blind and visually impaired
Pat worked to develop mobility skills for visually impaired adults, she describes the work and the clients

Part Six: For PKD research and organ donation
We hope to raise PKD awareness, what PKD Foundation can do, the need for more Americans to become organ donors

PKD at the Boston Marathon

2006-04-19T17:46:00.000-05:00

I was at the Boston Marathon Expo with my new RTPP shirt. A young woman with her kids in a stroller stopped me. She's run marathons but had come to watch her husband race.

"When is the Ride To Pikes Peak?" she asked. "I know about the PKD walks but I haven't heard of it."

I explained that we created RTPP to raise awareness for PKD research and organ donors. She told me how PKD is in her family and her mother received a kidney transplant a few years ago and is doing well.

I couldn't help but ask, "Do you have PKD?" She does.

America, we need medical research to find some effective treatment for PKD besides organ transplants.

At the expo I stopped in an Adidas booth and recorded this video about why I run. Adidas posted it on the web. Follow this link to Reasons To Run. The 10 second video, #1395, is on the cover page.

Boston Marathon

2006-04-18T20:09:00.000-05:00

The trip, the race, and the results were perfect. I'm more excited than ever about RTPP.

I'll post more information soon.

Here's pictures before and after.

Prep for Boston Marathon

2006-04-14T17:39:00.000-05:00

I leave tomorrow for Boston Marathon. Me and some of my running buds are in the race this year.

First stop was the barbershop at the YMCA. I work out at the Downtown St. Louis YMCA which is a great old historic Y building with a barber shop. Everyone loves Jean the barber. During the winter I grow my hair but since Monday is race day it's time to cut it all off. Aerodynamic.

Next stop was the flag shop where I special ordered a PKD flag for the ride. I'll post details later but I'm bringing the flag to Boston for the weekend and ultimately this flag's going to fly on top of Pikes Peak. The shop owner was a real help so I asked him to join me for the photo.

Lastly I got our shirts. Mom and I have a bunch of these for RTPP. some are white and the others are PKD teal like you see in the picture. I'm wearing one in Boston. Does teal go fast? We'll find out.

Sharing campsites - 200 years later

2006-04-10T16:07:00.000-05:00

In 1806, the first task for the Zebulon Pike Expedition was to escort a group of 51 Osage Indians who had been taken in a raid by the Patawatomi Nation. Their freedom had been negotiated by the United States. Pike’s force, on the river boats, accompanied the Osage Indians, who walked the distance along shore. The group arrived at the Osage Villages in mid-August, 1806. The Osage celebrated the safe return of their lost family and friends. The expedition stayed at the site for nearly two weeks. They left on September 1.

We’ve discussed our plans with the Four Rivers Missouri Conservation Area. This is the site of the historic Osage Villages site from the Zebulon Pike Expedition. A primitive camping site is available and we’ll stay there Sunday, August 6.

Added to the Zebulon Pike Bicentennial website

2006-04-09T21:00:00.000-05:00

I just found out our ride will be posted on the zebulonpike.org website. Very cool. We're hoping to connect with the historical excitement of the bicentennial celebration along the way.

From the www.zebulonpike.org webmaster:
We'll do a featurette on this that will appear on the Pike home page, probably in May. The featurettes are the first articles that appear when the site is accessed. They rotate out every month or so. The featurette will include the material that you sent and the map.

New story at www.pkdcure.org website

2006-04-07T21:17:00.000-05:00

The PKD Foundation has written and posted an article about our plans and our hopes to raise awareness for Polycystic Kidney Disease . Kara of the PKD Foundation interviewed us and wrote a story that does a great job explaining what we're doing and why. The article is posted in the Events section at www.pkdcure.org.

For more information about Pat Pokorny's life and the experience of having PKD and being in a family afflicted by PKD read Pat's PKD story in a blog posting here.

April 2006 for Organ Donor Awareness

2006-04-02T20:28:00.000-05:00

Before organ transplants, what hope did people have when they suffered from incurable organ diseases? In the case of kidney disease such as PKD they could do very little but prepare for the challenge of living on dialysis. The first case of an organ transplant was a living donor. In 1954 an identical twin donated a kidney to his brother. Now medicine has evolved but we need more Americans to consider the issue, take action and register as an organ donor.

Proclamation by the President:
I hereby proclaim April 2006 as National Donate Life Month. Last year, more than 28,000 organ transplants took place in the United States -- more than at any other time in history. Despite this progress, more than 90,000 of our fellow citizens remain on a waiting list for a donation, and many lives are lost each year while waiting for organ transplants. ... During National Donate Life Month, I urge more Americans to make the decision to donate the gift of life. Individuals can learn more about becoming an organ and tissue donor at www.organdonor.gov.

A Gift - An Obligation - A Privilege

2006-03-31T16:16:00.000-06:00

This morning while spinning I had this thought:

The "idea" of riding to Pikes Peak was A GIFT. For two or three months I was reluctant to accept it. Mom was more decisive. Accepting the gift became AN OBLIGATION to follow the idea wherever it might lead. And at the same time we recognize THE PRIVILEGE. We have been able to adjust and plan our lives to "go for it". We're fortunate to have help and support.

More at Finding Your Path and With Gratitude

Volunteering to do the chores

2006-03-28T21:15:00.000-06:00

You can take the farmgirl out of Iowa but you can't take the farm out the girl.

Pat is picking up some new volunteer work at Conner Prairie. The "living history museum" in Indianapolis has been the volunteer passion of a lifelong friend of Pat's for years. Pat has volunteered for occasional events in the past but now it looks like it's back to farm chores. Pat will be working with the livestock of the recreated frontier community a couple mornings a week before the museum opens.

I've never heard of PKD before? Is it a new disease?

2006-03-20T17:30:00.000-06:00

In the 1700s and 1800s, PKD was often given the label of Bright's disease. This term encompassed any of several kidney diseases marked by high concentrations of protein in the urine. Today, we know that many of the cases of Bright's disease were actually cases of PKD. The first documented case of PKD dates back to Stefan Bathory, the King of Poland, who lived from 1533 to 1588.

In addition, the PKD Foundation is the only organization in the world that focuses on PKD and it was not formed until the mid-1980s. It wasn't until fairly recently that PKD has gained some momentum in raising awareness and funds for the disease.

Another reason many have not heard of PKD is because it is an “internal disorder” — meaning that it does not have a dramatic affect on a person's outward appearance. A person living with PKD may have pain or trauma on their internal organs, yet they maintain a very “normal” physical appearance that does not attract attention or compassion from the unknowing public.

Above is from the PKD Foundation website.

This might provide clues why America hasn't heard of PKD but it's no justification for complacency. America (and the world) would benefit tremendously from breakthrough research which could stop cysts from forming and which could keep people off dialysis and keep PKD from progressing to renal failure. It would really make a difference for individuals and for society.

Getting up

2006-03-17T14:12:00.000-06:00

I wanted to title this post "getting my ass up" but I decided against it. Today I had an incredible run. I'm in San Francisco posting this in a corner coffee shop. I was invited by the St. Louis Blues for a trip to see the team play against San Jose. Today and Wednesday I was able to run the best route a long distance guy could ask for. Downtown along the bay to the Golden Gate across the bridge into Marin Hills. Wednesday I went up to Hawk Hill. Today I went down to Kirby's Cove. The many spectacular views and sights are incredible and touring the town one stride at time is the best. I detoured through the Presidio this morning. Really special. Anyway I got up before dawn to get the run in. That's how I get my runs and rides in. Just got to get my ass out of bed. Now stepping off the soapbox.

Retirement = more things to do

2006-03-13T21:30:00.000-06:00

Pat is going to the 2006 U.S. Transplant Games June 16 - 20. The event is in Kentucky. Pat will participate in cycling, volleyball and table tennis and meet other transplant recipients.

The U.S. Transplant Games is a four-day athletic competition among recipients of organ transplants. Competition in the U.S. Transplant Games is open to anyone who has received a lifesaving solid organ transplant--heart, liver, kidney, lung, and pancreas. Bone marrow recipients are also eligible to participate. As much as the Games is an athletic event that calls attention to the success of organ and tissue transplantation, it is also a celebration of life among recipients, their families and friends.

With Gratitude

2006-03-08T20:11:00.000-06:00

I wrote another post about Finding Your Path. If God has set a path for us then He plans for others to help us on the way.

Thank you ...

Michelle for the freedom to follow this where it leads
Our friends for encouragement
Mike for bike advice
Patrick for web advice and support
John, my favorite and creative TV producer/editor
Spencer and FSN for understanding
My running and cycling buds for their friendship
Kara at PKD for your enthusiasm
Jeff and Team 180 for the 2005 race and everything
Mark and Becky for storing the RV trailer
Mark your generosity (you're the first and that's cool)
SmithLee for converting the interview into streaming format
Kay, our generous flag bearer

Pat's life with PKD

2006-03-05T20:41:00.000-06:00

Pat Pokorny lives in Indianapolis, IN. She is a mother, a widow of a Lutheran pastor and a volunteer. Last year she retired from a career of work with the blind and visually impaired.

Pat Pokorny is the youngest of 10 children. Her parents were immigrants from Sweden and Denmark who settled in Iowa and worked in business and farming.

Her oldest sister was at medical school when she discovered that she had polycystic kidney disease (PKD). Medical history suggested PKD came through Pat's mother's family. Just a couple years later, when Pat was 12 her mother became extremely ill and died of kidney failure. Ultimately 6 of her brothers and sisters would be afflicted by PKD. 3 died from brain aneurysmms and 3 others were on dialysis before passing away.

When Pat married she discussed the possibility of PKD with her husband, Dan. Medical tests confirmed that cysts had begun forming in her kidneys. She had PKD. During pregnancy Pat's blood pressure increased. It was the first of many PKD symptoms which Pat would monitor the rest of her life. Through medication, healthy living and diet she managed her PKD and lived without significant restrictions.

In 1990 Pat's husband passed away. Pat, now in her mid 50s, went to college and received a Masters degree in Orientation Mobility. She moved to Indianapolis and began work at an Indiana state agency for the blind and visually impaired. The effects of PKD became more restrictive and Pat was assigned to the kidney donor list and began dialysis. She was able to continue to work during that time.

In 1998 Pat received a kidney transplant. She carefully monitors her health and has been able to accomplish much in the time since her kidney transplant surgery.

She worked 7 more years at the Indiana Bosma Center for the Blind. Following is a note from one of her clients sent on her retirement.

Pat,
You have touched so many lives, including mine. I believe my words were "I don't need a cane"! Showed me didn't you.
Thank you for giving me strength and courage to "see" in other ways. I also enjoyed our talks along the way on many subjects.
Best wishes, Elizabeth

Since receiving her kidney transplant Pat has completed the Indianapolis Half Marathon three times. She traveled to Macchu Picchu, Galapagos Islands and viewed Polar Bears in Churchill Canada. She is loved by her grandchildren and sees them as often she can. Last year she helped plan her daughters wedding.

You can read the PKD story of Pat's brother Bobby's family at the In My Generation blog post from early June.

The Pikes Peak Park Plaza (on wheels)

2006-03-03T08:52:00.000-06:00

Mom bought the trailer.

When she was on dialysis she put together a list of things she would do if she weren't on dialysis, i.e. if she could get a kidney transplant. There were trips to Macchu Pichu, Galapagos Islands, the Indianapolis Half Marathon and RV touring after retirement. This trip was a bit of a challenge from me to my mom to "go for it".

The trailer comes gently used and perfectly configured for our adventure. We'll have to paint a big "Pikes Peak Or Bust! on it. We had a "picnic lunch" in the trailer with my son Clayton this past weekend.

I'm in for 26.2 miles

2006-03-01T13:57:00.000-06:00

Together with a bunch of other 180 Energy Runners (my local running team) I'm registered for the 2006 Pikes Peak Marathon. Four 180 Energy Runners went to the race last year. Registration started today and the remaining slots will fill fast due to the recent publicity in Trail Runner Magazine.

Check out the course profile to the right. Simple. Run up then go back down.

Degrees of separation

2006-02-23T16:47:00.000-06:00

I've been thinking about degrees of separation lately. We've gotten help and ideas from some "friends of friends".

As I think about our publicity goals I wonder about the unknown folks who could help us tell people about this terrible genetic disease PKD. I think about who could help us share the message of how America and Americans benefit from organ donation.

Hey, someone knows someone who knows someone and they all could help raise awareness. It's that's easy.

Training - big week for spinning

2006-02-20T10:21:00.000-06:00

This past week cold air blew into St. Louis and I flipped my Saturday long run into additional time on the spinning bike. I've been training on the spinner for about 2 months now. I'm convinced that I'll be able to get enough training time in before August. When Spring arrives I'll be eager for the long weekend rides.

I'm running the Boston Marathon in April. I'm not sure how all this cross training on the spinner will affect the marathon preparation. My running mileage is down but my training hours per week are up.

I'm satisfied that I've got my priorities in place.

St. Louis PKD Chapter

2006-02-13T22:48:00.000-06:00

Thanks to everyone at the PKD meeting tonight who provided encouragement. There's a lot of possibilities and there's also a lot of work for mom and me to do. I shared a bunch of thoughts and plans tonight. For every one I mentioned be assured there's another 5 bouncing around in my brain. Thanks!

Pikes Peak Marathon in TrailRunner Magazine

2006-02-12T17:19:00.000-06:00

The 2005 Pikes Peak Marathon article in March 2006 TrailRunner Magazine. For more information about my photo which they included on page 2 follow this link.

My photo appears in TrailRunner

2006-02-12T09:05:00.000-06:00

I'm drinking my Sunday morning coffee and pick up my TrailRunner magazine which arrived yesterday. There's a feature article about the 2005 Pikes Peak Marathon. I open it up and find a photo of myself coming down the mountain in 2005. The photo was taken near the summit, the turn around banner is in the background.

I wasn't in the story. They must have just liked the photo. Very cool and another little hint that I'm following the right path.

I was feeling great at this point in the race. I was a little lightheaded but I enjoyed a great run to the top and was flying downhill. A couple miles later (at about the treeline) I discovered the quad pounding at that tempo was more than I could maintain. I ended up slogging along at a slower pace. Unfortunately I got passed by 20 guys on the downhill. 2005 Race Results

Some help to break the headwind

2006-02-11T18:37:00.000-06:00

Well I've got someone to share the road with. My friend and long time running bud, Tim Biscan, has blocked off August 3 - 6th to join me across Missouri. Tim and I have run a lot of miles together in the past 5 years. It'll be fun to ride together. Chances are I'll be doing a lot of training with him. He's moving to Columbia, IL which has a lot of great rides in the Mississippi River flood plain. Neither of us has done a multi-day ride before.

Can you imagine why anyone would do this?

2006-02-09T20:21:00.000-06:00

We've got two goals. (1) Have fun. (2) Raise PKD awareness.

More than any other, PKD is a disease that affects families. It's an attack on your opportunity to build a family and live with them.

Imagine being the youngest in your large family. Imagine your mother died when you were 12 years old and your brothers and sisters suffered and died from a disease which you also have. How would you feel? Imagine being married and telling your spouse about the possibilities that your children will inherit PKD from you.

Or imagine that your mother has a disease which will probably kill her. It doesn't register when you're a kid but when you get older you see her develop symptoms of the disease. Your aunts and uncles die. Your mom begins dialysis. You get a phone call and leave to be there when your mom wakes up with a transplanted kidney. And then your mom is there after your son is born. And then she's there when your sister is married. And she's there for you now.

Encouragement from a guy who knows

2006-02-08T14:37:00.000-06:00

I talked with a triathlete guy yesterday. Mark Livesay is the race director for the Ultramax series of triathlons held throughout the Midwest. We agreed on a few things. Wind from the west will be annoying. There are no extended climbs. I'm going to have to be smart about eating on the bike. It's a cool idea. Others may want to ride along. Community support would be helpful along the way. As for running Pike's Peak at the end ... well he says I'm a crazy runner with some crazy ideas. I guess we agree on that too.

Finding Your Path

2006-02-07T23:23:00.000-06:00

As I get older I've begun to love and appreciate how fate is like the hand of God.

As I debated in my mind the idea of my mom and I riding out to the Pike's Peak Marathon things happened that were like signs encouraging and directing me which way to go. I found a spinning bike at a bankruptcy auction. When I called Tim of the St. Louis PKD chapter to talk about the idea he was great, sending me right up to the national office for advice and help. In December I didn't get a job promotion, which would have killed the trip. The Zebulon Pike expedition of 1806, and the bicentennial group working on 2006. It continues on.

Call it what you will but for me it's wonderful to find hints from God about what to do and encouraging me that I'm headed on the right path.