Bowl-A-Thon to Benefit Rare Children’s Disease
Sunday, August 30, 2015 at Bowl-A-Roll Lanes
Rochester, NEW YORK, AUGUST 3, 2015 – Lynn Bement of Rochester, NY will be hosting the “Strike Out A-T” Bowling Party at Bowl-A-Roll Lanes in Rochester. The event will benefit the A-T Children’s Project, an organization dedicated to finding life-improving therapies for ataxia-telangiectasia, a rare, fatal genetic disease that affects children.
There are currently just over 7,000 rare diseases identified affecting 30 million people in the US alone. Although these numbers are staggering, what is of even greater concern is that approximately 75% of those affected are children, making this disease category one of the most deadly and debilitating for children in the United States.
Several years ago, when Lynn Bement learned that her daughter Tori was diagnosed with A-T, she felt devastated and did not know where to turn. Then, she discovered the A-T Children’s Project, learning that not only was there an organization looking for a cure for A-T, but she could join dozens of other families from all over the country in their fundraising efforts. She felt hope. “Knowing that families and researchers are working together to help find a cure for this extremely rare disease makes us feel like we are not alone, and gives us hope for a better future for Tori.” Currently, the A-T Children’s Project is funding two research grants at the University of Rochester in the labs of Margot Mayer-Proschel, PhD and Mark Noble, PhD. Proceeds from this event will help fund projects such as this in the efforts to find a cure for A-T.
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 out there 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 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.” According to Lynn Bement, “We won’t give up either, and we are so grateful for our friends and family who are fighting with us in a battle for Tori’s life.”
The event will be held at Bowl-A-Roll Lanes from 1:00 – 4:00 PM on Sunday, August 30, 2015. For more information and/or to purchase tickets to the event, visit www.atcp.org/RochesterStrikeOutAT.
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. For more information please contact 585-943-9805, or email us at lmbement@rochester.rr.com
