What You Can Do To Help

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

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

1. Cell phones, laptop computer and wireless internet. (Many Thanks to Cingular Wireless and FOX Sports Net (my employer) for the computer)
2. A sign company to print adhesive decals for the trailer to promote PKD and RTPP ( Many Thanks to Commerce Color and Jeff Moore)
3. 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).
4. More to be determined. (check this space)

A dark roasted toast to dad

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

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

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

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

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

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

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

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

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

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

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

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.