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February 19, 2003


Atlanta Teenager's Book on Fragile X Syndrome is Personal Account of How Disabilities Affect Families

ATLANTA--Carly Heyman is a 16-year-old girl who knows first-hand the tremendous challenges of a major disability ­­ not her own, but that of her 22-year-old brother, Scott. When Scott was four years old, he was diagnosed with fragile X syndrome, which is the leading cause of inherited mental retardation.

Scott was diagnosed by geneticist Stephanie Sherman, PhD, at Emory University School of Medicine. Stephen T. Warren, PhD, chair of the Department of Human Genetics, directs one of the oldest and largest research programs on fragile X syndrome in the world, housed at Emory.

Carly has written a new book, entitled My eXtra Special Brother, published this month by Lightening Source, a subsidiary of Ingram Books, in which she describes with loving candor her personal experiences with her older brother, including her struggles, frustrations, and exhilaration as she learns the skills to cope with his limitations.

As Scott’s greatest fan from a very young age, Carly has grown from simple acceptance of her older brother to rejoicing in his individuality. By sharing her journey with other siblings of children with special needs, Carly hopes to inspire closer family relationships.

Carly’s new book reflects a growing public interest in children with fragile X syndrome and the positive contributions they and their friends and families often make to their communities. A widely reported story recently described a high school senior with fragile X syndrome who touched hearts across the country when he was encouraged to score a touchdown for his football team.

Carly has spoken to a number of school and community groups about her personal experiences with fragile X syndrome. On April 3 she will speak to students in Emory University School of Medicine about the effects of disabling genetic diseases not only on the affected individuals but on their families.

Proceeds from the book will benefit children and families with fragile X syndrome through the non-profit Fragile X Association of Georgia. Emory University’s genetics research team has been closely involved with patients and families through the Fragile X Association.

Drs. Warren and Sherman are international authorities on fragile X syndrome and have been performing research on fragile X syndrome since the early 1980s. Dr. Warren led the international team of scientists who in 1991 discovered the FMR1 gene, which is responsible for fragile X syndrome. Most of our current understanding of this syndrome and its consequences come from the research carried out by Dr. Warren and his colleagues over the past decade.

In 1993, expanding on their initial discovery of the fragile X gene, Dr. Warren and his colleagues discovered FMRP, the protein expressed by the normal FMR1 gene, and learned that fragile X syndrome occurs when the FMR1 gene does not produce the FMRP protein. The suppression of that protein is responsible for the symptoms of the disease, which include mental retardation, attention deficit disorder and connective tissue disorders.

Dr. Warren recently created a new mouse model of fragile X syndrome and is beginning to test drugs that might reactivate the inactivated gene responsible for the syndrome. This mouse model represents the first real model of fragile X syndrome that can be used to develop therapeutic approaches.

"We are extremely hopeful that with continued research, we will soon have a therapeutic treatment for fragile X syndrome," Dr. Warren says. "Our involvement with fragile X families and the concern of family members like Carly make it a very personal quest for us."

Carly will sign copies of her book at several Atlanta locations during the upcoming month:

Sunday, March 9
2:00 pm
Chapter 11 Books
Delk Rd.

Monday, March 10
2:30 pm
The Epstein School

Wednesday, March 12
12:00 pm
Woodward Academy
College Park. Georgia

Saturday, March 29
2:00 pm
Media Play
Johnson Ferry Rd.

Wednesday, April 2 2:30 pm
Wheeler High School
Marietta, Georgia

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