Friday, February 6, 2009

Fragile X Friday





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Saturday, February 7, 2009


Understanding Fragile X and Other Genetic Syndromes


If you don't know what Fragile X syndrome is, you are not alone. Fragile X is a family of genetic conditions that impact people and families in various ways. Some people have major challenges while the impact on others is minor. Join Nurse Rona and guests, Dr. Randi Hagerman, Medical Director at the UC Davis M.I.N.D. Institute and a Professor of Pediatrics, Daniel Dolgin, a young man who has Fragile X syndrome, and his mother, Elisa Brooks, to learn about this genetic condition.


Guests:Randi Jenssen Hagerman, MD, is the Medical Director of the UC Davis M.I.N.D. Institute as well as a Professor of Pediatrics in the School of Medicine. Dr. Hagerman has worked in the Fragile X (FXS) field since 1980. Her early work focused on describing the physical and behavioral features of the syndrome and, together with parents of affected children, founded the National Fragile X Foundation in 1984. In 2000, Dr. Hagerman initiated The Fragile X Research and Treatment Program at the M.I.N.D. Institute, which grew into the Fragile X Research Center of Excellence, where she studies behavioral and emotional problems in males and females with FXS, including ADHD, anxiety, psychosis, and autism. Currently, Dr. Hagerman, a developmental behavioral pediatrician, and her husband, Paul Hagerman, MD, PhD, a molecular biologist, have established a productive molecular-clinical team of researchers focused on identifying Fragile X as a subgroup of autism.


Daniel Dolgin, 17, was diagnosed with Fragile X as a young child. He is currently a Junior at Tamalpais High, where he is a Peer Resource Counselor and a third year Drama Student. He is a great dancer, who loves music and technology. He travels to Thailand and all over the world, managing international travel alone with connections in the Far East.


Elisa Brooks is Daniel’s mother. She proactively had Daniel diagnosed with Fragile X when many people insisted that she was overreacting. She also has a daughter who is a genetic carrier of Fragile X Syndrome, but as a female does not express it to the same degree as her older brother.



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