Villager hosting benefit line dance to raise funds for research of genetic disease that affected her family

By CAROLINE KLAPPER, DAILY SUN

THE VILLAGES — It is hard to lose a family member at any time, but it might be even harder when a loved one dies from an illness most people never have heard of.

Such a situation is what Village of Piedmont resident Jean Brewer had to endure when her niece Melissa — or “Missy” as her family calls her — died four years ago from leukemia brought on by the condition Ataxia-Telangiectasia.

What is Ataxia-Telangiectasia?

A-T is a rare genetic disease that results in the progressive degeneration of the part of the brain called the cerebellum. A-T occurs when parents are both carriers of the A-T gene and unknowingly pass it on to their child.

According to the A-T Children’s Project, A-T children appear to be normal at birth, but at around age 2 the first signs of the disease usually start to appear. This progressive disease leads to a general lack of muscle control, which eventually confines the patient to a wheelchair, and it compromises the immune system and predisposes patients to fatal cancers. Only about one in 40,000 births will result in a child with A-T.

Children with A-T rarely survive beyond their teens, but Missy was 31 when she passed away.

“She outlived the odds,” Brewer said, looking at a photograph of a beaming Missy.

Spreading awareness

In Missy’s honor and in an effort to raise money for A-T research, Brewer is hosting an A-T Children’s Project Benefit Dance on Thursday at La Hacienda Center. Tickets are $10, and all proceeds will go to the A-T Children’s Project, which conducts biomedical research projects and funds the A-T Clinical Center, aimed at finding a cure or life-improving therapies for the disease.

“Most people haven’t (heard of A-T), and that’s the problem,” Brewer said of the disease. In fact, the condition is so unusual that it took nine years for doctors to figure out what was causing Missy’s problems.

By raising awareness and funds, Brewer said she hopes to improve the lives of people with A-T and those with other genetic disorders.

“The thing with the research is that not only will it help A-T, but it will help other genetic disorders,” Brewer explained. “The more they research this, the closer they may be to a cure. These children don’t have a very pleasant existence in the few years they have.”

The A-T Children’s Project is searching for treatments through gene therapy, the use of neural stem cells, bone-marrow transplantation, antioxidants and the testing of medications and new drugs that might help A-T patients.

A fun fundraiser

As a line-dance instructor in The Villages, Brewer thought creating a country line-dance fundraiser would be a great way to raise money for A-T. This year will be the fourth dance she has put together, and she said they have been popular, raising about $3,000 last year.

“People have been very supportive,” she said, adding that Jan and Ross Ramsey will play the music. “We just have a good time.”

The event will be an open line dance with a request list, and to make it just as much fun for beginning line dancers, Brewer said they will modify the more advanced dances to levels where “everybody can do it.”

In addition to the dancing, there will be door prizes and 50/50 chance drawings.

Brewer said the goal of events such as the country line-dance fundraiser is to provide enough funds to A-T studies to eventually find a cure for the disease. She said her niece, Missy, is her inspiration for doing what she can to help the A-T Children’s Project.

“The ultimate goal would be to know ahead of time and be able to corral this disease,” she said.

Caroline Klapper is a reporter with the Daily Sun. She can be reached at 753-1119, ext. 9018, or caroline.klapper@thevillagesmedia.com.