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1,000 miles for PKD

by jmaloni

Wheatfield man pedals for cure

Thu, Sep 16th 2010 09:00 am
by Susan Mikula Campbell

Jonathan Paul Siuta is on a mission, and an adventure, for a cause.

The 24-year-old Wheatfield resident pedaled out of town on his bicycle, pulling a small equipment cart, on Friday, Sept. 10, heading for Washington, D.C.

The mission part of his ride is to raise money for polycystic kidney disease research and to raise awareness of the disease.

"Polycystic kidney disease affects a large part of my family," he said. "If I am able to draw up enough support on this current trip, I would like to plan a bicycle trip across the United States from coast to coast starting in the spring of 2011."

The adventure aspect of his trip comes into play because he's not an expert long distance bike rider. Previously, he's only been on short jaunts while on family vacations. He's riding an inexpensive bike, pulling a cart with his supplies, cooking his own food and sleeping in a tent when he can't stay with friends along the way. He estimates the round trip to the PDK Foundation's National Chapter in D.C. and back to Wheatfield will take about a month and 1,000 miles.

"I just hope my legs get broken in by the time I get to Pennsylvania," he said before he left. "I don't feel I will have too much trouble I can't overcome. I'm used to being by myself and pushing myself to get stuff done."

Siuta has a website through the PKD Foundation where donations can be made. Go to http://www.pkdcure.org/ridewithpride. The website contains a link to follow his progress on the trip (he's carrying a GPS unit). He also can be found at Facebook http://www.facebook.com/#!/pages/Jonathan-Paul-Siutas-bicycle-trip-for-Polycystic-Kidney-Disease/144710325567499?ref=sgm.

On Tuesday, Siuta e-mailed the Tribune with the following message:

"Everything is going great. So far I went approximately 100 miles of the roughly 1,000 miles on the bicycle to get to Alfred. The first day was approximately 12 hours on the road and day two was approximately 14 hours. I took a few days at Alfred to plan for the rest of the trip. Since I've never done anything like this before, I wanted to use the distance to Alfred as a learning tool. I will now be better prepared for the steep grades of the Pennsylvania landscape. I had to change my supplies and rearrange the 90-pound cart I was pulling behind the bicycle. This is a wonderful challenge I hope to conquer. I am visiting friends at Alfred State and will continue on the trip early tomorrow morning."

According to Lauren Henson of the PKD Foundation headquarters in Kansas City, polycystic kidney disease, for the most part, is genetic. Those who have PKD have a 50 percent chance of passing it on to their children. Only about 10 percent of PKD cases are caused by spontaneous mutation of genes.

In Siuta's family, his maternal grandfather had PKD and passed it to seven of his eight children, he said.

In the United States, there are about 600,000 cases of PKD and in New York state, about 40,000 cases are reported, according to Henson.

In the dominant cases, Henson said, PKD causes cysts to grow on the kidney, preventing it from functioning fully. It causes side and back pain and pain from cysts bursting. High blood pressure also is a symptom of PKD. As the disease progresses, it can lead to the need for dialysis or kidney transplant.

Siuta doesn't know if he has the PKD gene.

"I've never been checked, so I don't know. ... I hope I don't," he said.

Siuta, a member of the Siuta Farm family, works with his father, Paul, on the family farm and helps with their Landmark Land Surveying Co. Siuta graduated from Niagara-Wheatfield High School in 2004 and has a few classes to finish before receiving his degree in land surveying at Alfred State University.

His mother, Ailleen, worries about the dangers of him taking the trip on his own, instead of in a group, even though he has already called home and her girls keep track of him on Facebook. Still, she's very proud of what he plans to accomplish.

"I think it's great what he's doing," she said. "He still has his energy, and he's still charged. He wants to raise money and he wants to bring awareness (to PKD), so he's going to keep his spirits up."

Her son decided to make his bike trip for PKD about a month ago.

"I wanted to do something outrageous and hard, and I hope people acknowledge that with donations," he said.

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