Why I Run

Why I run…

Why did you join Team PKD? Read what motivates others and tell us why you run.

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Ron Kennedy

Ron Kennedy

Ron runs in honor of his wife, Tracey.

Ron runs in honor of his wife, Tracey.

More than 30 years ago, Ron and Tracey met as students at Northeastern University. They dated for six months and then were separated by circumstances for the next thirty years. Tracey discovered, during the birth of her son, that she had PKD. She took excellent care of herself, but in the fall of 2012 her kidney function decreased to only 2%.

Tracey received a miracle kidney the next January from an old high school friend. As she recovered, she started to look up old friends and wondered what had become of Ron. She tracked him down, they met, and one thing led to another. Ron and Tracey were married in September, 2014.

Ron has completed more than 30 marathons over the years, and vowed that he was finished with them. But when he and Tracy reconnected, he knew he had to do something to help. So in November, 2014, Ron ran the TCS New York City Marathon in honor of his new wife. He says, “This disease almost took the one true love of my life and my hope is that by raising funds for The PKD Foundation, perhaps someone else will be spared in order to find theirs.”

Run for PKD experience life changing for Whitney Chapman

Whitney Chapman

For Whitney, running is about people coming together to believe in the extraordinary.

Thanks to the PKD Foundation, I ran the 2014 New York City Marathon this past weekend for the first time. The journey to the marathon has been a life-changing event for me.

When I received the email from the PKD Foundation looking for runners this past spring, I was in a personal funk. I knew that I needed to face some big changes in my life, but I was afraid of exploring them.

I have a dear friend that if we don’t see each other during the year, our standing date is the 26 mile marker of the marathon. For years we watched people finish, and I thought it must be amazing to do. But, after a few hours of watching runners finish, I always thought it would be too hard. The email from the PKD Foundation helped me take the leap of faith.

I knew that if I did the race a few things would happen.

  1. I would commit to the training to ensure I wouldn’t get injured.
  2. Committing to the training would be committing to myself also, helping me learn to stay focused on me.
  3. I’d be challenged, pushed out of my comfort zone and tested.

All of these points came true. But what I learned along this journey far exceeded my concerns, fears and expectations. I learned that:

  • People can be very generous. When people heard I was doing this, they made donations, even if I didn’t know them well. I was blown away. It made me look at my own generosity. Was I/am I giving enough support to others?
  • Running is hard. Running can be easy. Running isn’t something I love, but I have come to enjoy what it can do for me. I have learned more about NYC and Central Park that I ever realized. I like running TO places and not being in a hurry so I can discover things along the way.
  • I am stronger that I think. I’ve learned about inner strength and perseverance. I have found great pride when I have been out running in the rain when most people chose to stay inside.
  • I can deeply listen to my body and better understand the signals and warnings.
  • Like a great meditation practice, I have learned to become more conscious of my thoughts and where my mind has taken me.
  • I want to train for another SHORTER race, which surprises even me.

At the pre-race dinner that was hosted for the runners, I was moved to tears by the courage of those who are living with PKD or who lost someone to PKD. Suddenly, the reason I was doing this race really hit home. I learned about PKD from my childhood friend, Michele Karl, whose children have autosomal recessive PKD. I originally saw running as a selfish thing I was doing for me while I raised some money to help others.

At the end of this long journey, I learned that it was more than about me. It was /is about a community, a city coming together to believe in the extraordinary. I am deeply humbled by those who ran the race with greater ease. I’m humbled by those who live with PKD and go on because they have dreams and desires for a life without pain. I’m grateful to the PKD Foundation for having a spot in the race and am proud to help spread the word of the work that they do. THANK YOU for all the support and encouragement!

With deep gratitude-
Whitney Chapman

Help those affected by PKD, while getting fit

Steve Donboch

Steve was not always a runner but everything changed when his baby daughter, Emslie was born.

Steve Donboch was not always a runner. In fact, he used to claim he would only run if something was chasing him. Then, something happened in Steve’s life that changed his mind about running: his baby daughter, Emslie.

“Emslie means ‘gift from God,'” said Steve. “It was a very fitting name for her.”

His baby girl was diagnosed with ARPKD, a form of PKD that affects infants within their first month of life. When Emslie lost her life to the disease, Steve knew he needed to find a way to help other families like his.

“Helping others helps me heal,” he said. The self-proclaimed non-runner decided to get involved with the Run for PKD. “I needed to be a part of something in my little girl’s world. The Run for PKD program was my in.”

Steve chose the “Your Local Race” option of the Run for PKD program, recruiting seven friends to join him for the 2012 Savannah Rock and Roll Marathon. Then he purchased the book “Running a Marathon for Dummies,” and hit the road.

Steve’s team found the most success by joining forces on their fundraising. Together they formed partnerships with local businesses, set up booths at restaurants and sold concessions at sporting events and concerts (where they were allowed to keep tips and a percentage of profits). They had t-shirts, car magnets and bracelets with their team name: Emslie’s Fight. They held raffles, raised money and educated people about PKD. Their fundraising surpassed their goal and raised more than $7,000 dollars.

Then, ten days before the race, Steve’s training took a turn for the worst. His leg gave out during a run. The doctor told him he broke his fibula and couldn’t run the marathon. All Steve could think about was how he promised he would finish the race for Emslie.

Determined, he borrowed a wheelchair for the race, and miraculously finished the entire 26.2 miles by pushing himself in the wheelchair. His inspiring race, added with his teal hair, dyed in honor of the PKD Foundation, gave Steve a chance to educate even more people about the disease.

“The best part about Run for PKD is that people can help others while simultaneously helping themselves by becoming healthy,” said Steve. “It changed my life, and I am watching it change other peoples’ lives.”

He encourages anyone to join—whether you are an experienced runner who wants to support an important cause, or an inexperienced runner who has friends or family affected by PKD. Steve ran the 2013 Savannah Rock and Roll Marathon again this year in November. He enjoyed running this time, and as always, doing what he can to end PKD in Emslie’s honor.

“PKD is the reason I don’t get to hang out with daughter,” Donboch said. “But I’ve spent time with a lot of others who could use a louder voice. I am proud to help as I can. Someone told us once, ‘If your child isn’t around to make you proud every single day, then you need to spend every single day making them proud of you, because you know they’re watching.’ That’s what I try to do.”

Running to end PKD, one race at a time

Garibay Family

For Albert, an athlete his entire life, running seemed like something he could do to help his wife.

In March 2011, Hillary Garibay was diagnosed with PKD. Not knowing anything about the disease, she and her husband, Albert, started researching and came across the PKD Foundation’s website. Through the website, they learned about the Run for PKD program. For Albert, an athlete his entire life, running seemed like something he could do to help his wife.

“I felt helpless, because I couldn’t take her pain away,” recalls Albert. “But through this program, I can help her.”

And as luck would have it, Albert was already signed up and training for the San Diego Rock ‘n’ Roll Half Marathon. So, he joined the Run for PKD team and began fundraising. Albert has been running for Hillary and for PKD for three years now – and has raised more than $11,400 for the Foundation.

“He’s so supportive,” says Hillary. “Albert devotes his time, energy and even his legs to help find treatments and a cure for PKD.”

Albert and Nolan

Albert has a little helper in his fight to end PKD –
the couple’s five-year-old-son, Nolan.
(Photo courtesy of Andy Gravano)

And Albert now has a little helper in his fight to end PKD – the couple’s five-year-old son Nolan. The day before his dad ran the half marathon, Nolan ran a ½ mile in the ING KiDS ROCK San Diego and raised $790. Although Nolan is not aware of his mom’s disease, he knows he’s running for her. “He says that he runs so his mom’s back doesn’t hurt anymore,” says Hillary.

Albert and Nolan will continue their fight to end PKD when they run in the Marine Corps Marathon on Oct. 27 in Washington D.C. Albert will run the full marathon and Nolan will run 1 mile in the Healthy Kids Fun Run.

Albert is grateful that the PKD Foundation provided him an outlet to support his wife, and all those affected by PKD. His focus is on doing all he can to end this devastating disease. “I’m never going to stop,” says Albert. “I want us to be happy and grow old together.”