KMOX

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!