PRLog (Press Release) –
Mar 03, 2008 – DEERFIELD BEACH, FL, February 29, 2008 – The A-T Children’s Project announced that Olympic triathlete Hunter Kemper will be the Honorary Coach for the organization’s Danskin® Women’s Triathlon Team for the WALT DISNEY WORLD® event on May 11, 2008. Triathletes who register to participate in the Danskin® Women’s Triathlon at WALT DISNEY WORLD® through the A-T Children’s Project will receive access to a six-week training program and tips for success endorsed by Kemper. Registration through Danskin® is sold out for this extremely popular race, but a limited number of people who commit to raising $600 for the A-T Children’s Project can still participate.
In addition to being a two-time Olympian, Kemper is a six-time US Elite National Champion, 2005 United States Olympic Committee’s Sportsman of the Year, 2005 World Ranked #1, and 2003 Pan American Games Gold Medalist. Hunter is disappointed that he will not be able to attend the event in person, but it is for a good reason. In May, he will be preparing for the 2008 Olympic Trials.
While in Grand Rapids, Michigan in late in 2007, Kemper met Dave and Mary Veldink and learned that two of their children, Kate (age nine) and Olivia (age six) had both been diagnosed with ataxia-telangiectasia, or A-T. Kemper and his wife, Valerie, were touched by hearing their story. He decided to run the WALT DISNEY WORLD® Half Marathon in January with the Veldinks, their friends and family, and dozens of other A-T families who come each January to raise funds and awareness to find a cure for A-T. “I was hoping to win the race for Kate and Olivia and all the kids suffering from A-T, but unfortunately I could only pull out a 4th place finish (1:08.28). I had so much fun and I felt proud and privileged to race for this special cause,” says Kemper. “Our hearts will never be the same,” adds Valerie, “and Hunter and I are very excited to get more involved with the A-T Children’s Project.”
The A-T Children’s Project was founded by Brad and Vicki Margus, who have two children with A-T. The project raises awareness and funding for research and clinical trials that will benefit all children with A-T. To date, the project’s research has led to the development of treatments for A-T symptoms, including feeding tubes and immune therapy, as well as gaining a deeper biological understanding of how a mutated A-T gene causes many severe problems.
“When Jarrett and Quinn were diagnosed, Vicki and I quickly realized that research on A-T was limited and really needed to be expanded, not just for our boys but for other families as desperate as we were to help their kids with
A-T,” Brad Margus said. “We started the A-T Children’s Project to focus on a simple mission: accelerate research, provide hope, and find a cure.”
While scientists estimate one in 40,000 babies is born with A-T, it is not known exactly how many children actually have A-T because the disease is often misdiagnosed. Dr. Howard Lederman of the Johns Hopkins Children’s Center believes learning more about A-T could lead to advances in other more common diseases as well. “A-T’s shared traits with Alzheimer’s, Parkinson’s and many forms of cancer suggests that a better understanding about A-T could reveal more about those diseases as well.”
For Brad and Vicki Margus, nothing less than finding a cure will be a success. “Kids and families are counting on us and we won’t give up until we do.”
For more information about the A-T Children’s Project’s Danskin® Women’s Triathlon Team, please visit www.atcp.org.
About the A-T Children’s Project
The A-T Children’s Project is a nonprofit organization formed to raise funds to support and coordinate first-rate biomedical research projects, scientific conferences and a clinical center aimed at finding a cure or life-improving therapies for ataxia-telangiectasia. To learn more about the A-T Children’s Project, visit www.atcp.org.
About ataxia-telangiectasia (A-T)
A-T is a progressive, degenerative disease that affects a startling variety of body systems. Children with A-T appear normal at birth, but the early signs of the disease usually appear during the second year of life. A-T causes the relentless loss of muscle control, usually making children dependent on wheelchairs by age 10 and making it difficult for them to read, speak and eat. Children with A-T also have a strikingly high risk of cancer. Although considered a rare “orphan” disease, A-T may actually be much more common than we know, since many children with A-T, particularly those who die at a young age, are never properly diagnosed. There currently is no cure for A-T and no way to slow the progression of the disease. Research on A-T may help many more common diseases, such as cancer, Alzheimer’s disease and Parkinson’s disease. To learn more about A-T, visit www.atcp.org.
