Athens Online

Time for giving

By Chris J. Starrs - Correspondent

In early May, the Van Schoik family hosted a party at their Bogart home where more than 100 people attended, two bands performed, the weather was perfect and visitors danced until the late hours.

"We had a blast," Nelda Van Schoik said. "It was a lot of fun."

However, the fun was underscored by the serious reason the party was held. Two of Nelda and Robert Van Schoik's three daughters - 26-year-old Robbi and 23-year-old Becca - suffer from Friedreich's Ataxia, and the gathering, which included a silent auction, was held to raise money and awareness for the disease.

According to the Friedreich's Ataxia Research Alliance , the disease is an inherited one that causes progressive damage to the nervous system, resulting in symptoms ranging from weakness and speech problems to heart disease. There is no cure for Friedreich's Ataxia, although researchers have been able to establish treatments to deal with some of the symptoms and complications from the disorder.

In the past three years, the Van Schoiks have been able to raise about $35,000 for the Virginia-based FARA, an organization founded in part by parents whose children suffer from the disease.

"It's a very rare disease," Nelda Van Schoik said, who after years as a physical therapist now works as a real estate agent for Prudential Blanton Properties. "There are about one in 50,000 people in the United States who have it, and only one in 100 people carry the gene that causes it. My husband and I are both carriers and it was a shock for us to find out, because we otherwise had no way of knowing."

Nelda Van Schoik added that due to chromosome defects, Friedreich's Ataxia victims don't have the necessary cells to produce protein, which disables the brain, spinal cord and muscle cells. The disease affects the heart, skeletal muscles and nerves, and can negatively affect vision, hearing and swallowing while causing a general weakness.

"When they were small, they were perfectly normal, especially Rebecca," Nelda Van Schoik said. "Robbi began showing symptoms at the age of 5 and both have had several back surgeries. It's a lot like muscular dystrophy - there's a weakness over the whole body that gradually gets worse and worse."

Despite the health issues Robbi and Becca face on a daily basis (both have been in wheelchairs since their teens), they lead lives that are as normal as possible. Robbi graduated from the University of Georgia in 2003 with a degree in psychology and Becca is a 2005 graduate of The University of Notre Dame with degrees in Spanish and sociology.

Nelda Van Schoik said her daughters have between 30-40 hours of home health care each week. Becca serves as a volunteer translator at Georgia's Institute on Human Development and Disability (where her mother is on the community advisory board) and works one afternoon a week at the Athens-Clarke County Library branch in the Pinewood Mobile Home Community. Robbi currently is in graduate school at UGA, studying for a master's degree in public health administration.

"Neither of them can do too much because they suffer from terrible fatigue," said Nelda Van Schoik. "Robbi only takes one course at a time, but she loves it."

The couple's youngest daughter, Kate, a rising junior at UGA, will soon turn 20 and has exhibited no symptoms of Friedreich's Ataxia. Nelda and Robert Van Schoik are both from Texas and moved to the Athens area in 2001 because of Robert's job with Merial LTD.

The Van Schoiks' determination to help find a cure for Friedreich's Ataxia has inspired many in the area, including Bogart resident Mark Meadows, whose daughter is friends with Kate Van Schoik.

"We've met Robbi and Rebecca and we've got a lot of compassion for what they're going through," Meadows said. "I've run in seven marathons and I'm planning to run in the New York Marathon in November. I've always wanted to raise money for a worthy cause through a marathon, and after attending (the Van Schoiks') party, I decided to seek sponsors to raise money for FARA."

Meadows, who has gained a wealth of contacts through his 23 years as a sales representative, said he plans "to call on them all" for sponsoring his New York Marathon fundraiser.

"I'm looking forward to doing what I can to help," he said. "I ran in the Boston Marathon earlier this year and saw so many people running to raise money for different charities. I feel like I need to do that - I need to give something back."

Meanwhile, the Van Schoiks will continue their collective vigilance in fighting the disease and supporting FARA.

"When you deal with (Friedreich's Ataxia) like we do, you realize that if you don't do something, it won't get done, especially when it comes to such a rare disease," said Nelda Van Schoik. "It's up to the parents - the parents have to take the bull by the horns."

For more information on the Friedreich's Ataxia Research Alliance , visit www.faresearchalliance.org. To contact the Van Schoik family, e-mail then at neldasvs@aol.com.