Fragile X Clinic for study of mental retardation
The Fragile X Clinic within the M.I.N.D. Institute (Medical Investigation of Neurodevelopmental Disorders) at UC Davis Children's Hospital conducts team clinical evaluations of children who have been diagnosed with fragile X syndrome, an inherited genetic condition. Fragile X syndrome, also known as “Martin-Bell syndrome” or “marker X syndrome,” is a genetic condition caused by an abnormality in the X chromosome.
Fragile X syndrome can cause numerous developmental problems, ranging from learning disabilities to severe mental retardation. It is the most prevalent cause of inherited mental retardation. The M.I.N.D. institute was organized to conduct research leading to more effective treatments for neurodevelopmental disorders, including autism, epilepsy, language and learning disabilities and fragile X syndrome.
The fragile X team operates under the direction of Randi J. Hagerman, the M.I.N.D. Institute’s medical director, in coordination with genetic associate Louise W. Gane, M.S. Together, they likely have consulted more fragile X patients than anyone else in the world. The fragile X team also includes psychologists David Hessl, Ph.D., and Beth Goodlin-Jones, Ph.D.; occupational therapist Laura Greiss-Hess; and speech and language therapist Kerrie Lemmons-Chitwood.
Internationally recognized for their work with fragile X syndrome, Randi Hagerman and her colleagues have appeared on ABC television’s Good Morning America, CBS television’s 60 Minutes, and on the BBC’s Panorama television program. A leading researcher, Randi was involved in the first study that identified a link between fragile X syndrome and autism. She was the first medical scientist to recognize that males characterized with “premutation” are at increased risk of exhibiting tremor ataxia syndrome (FXTAS), and she also was the first researcher to identify specific genetic mutations in females who have fragile X syndrome.
Randi Hagerman and her colleagues make themselves available to answer the questions of parents of children who have been newly diagnosed with the disorder. Patients and their families come into contact with the clinic through physician referrals, recommendations from parents of other fragile X patients, and through research on the Internet.
Fragile X Clinic patients, many of whom are from other states and other nations, spend three to four days in evaluation at the MIND Institute Clinic, 2825 50th Street in Sacramento. The clinic staff members reassure parents that the diagnosis doesn’t change who their child is, and discuss medical and therapeutic treatments that can make a difference in lives of their children. The comprehensive assistance offered through the clinic even encompasses preparation of individual education plans (IEPs) to guide schools in accommodating the needs of fragile X syndrome patients. They provide consultive advice to physicians, researchers, psychotherapists, school officials and other professionals who work with children.
To schedule an evaluation appointment for a child, contact:
(800) 482-3284. Because of high demand, waiting times average four to six months.
Fragile X syndrome can cause numerous developmental problems, ranging from learning disabilities to severe mental retardation. It is the most prevalent cause of inherited mental retardation. The M.I.N.D. institute was organized to conduct research leading to more effective treatments for neurodevelopmental disorders, including autism, epilepsy, language and learning disabilities and fragile X syndrome.
The fragile X team operates under the direction of Randi J. Hagerman, the M.I.N.D. Institute’s medical director, in coordination with genetic associate Louise W. Gane, M.S. Together, they likely have consulted more fragile X patients than anyone else in the world. The fragile X team also includes psychologists David Hessl, Ph.D., and Beth Goodlin-Jones, Ph.D.; occupational therapist Laura Greiss-Hess; and speech and language therapist Kerrie Lemmons-Chitwood.
Internationally recognized for their work with fragile X syndrome, Randi Hagerman and her colleagues have appeared on ABC television’s Good Morning America, CBS television’s 60 Minutes, and on the BBC’s Panorama television program. A leading researcher, Randi was involved in the first study that identified a link between fragile X syndrome and autism. She was the first medical scientist to recognize that males characterized with “premutation” are at increased risk of exhibiting tremor ataxia syndrome (FXTAS), and she also was the first researcher to identify specific genetic mutations in females who have fragile X syndrome.
Randi Hagerman and her colleagues make themselves available to answer the questions of parents of children who have been newly diagnosed with the disorder. Patients and their families come into contact with the clinic through physician referrals, recommendations from parents of other fragile X patients, and through research on the Internet.
Fragile X Clinic patients, many of whom are from other states and other nations, spend three to four days in evaluation at the MIND Institute Clinic, 2825 50th Street in Sacramento. The clinic staff members reassure parents that the diagnosis doesn’t change who their child is, and discuss medical and therapeutic treatments that can make a difference in lives of their children. The comprehensive assistance offered through the clinic even encompasses preparation of individual education plans (IEPs) to guide schools in accommodating the needs of fragile X syndrome patients. They provide consultive advice to physicians, researchers, psychotherapists, school officials and other professionals who work with children.
To schedule an evaluation appointment for a child, contact:
- Louise Gane, (916) 703-0238, or
- Meridith Brandt, community health program representative, (916) 734-6773.
(800) 482-3284. Because of high demand, waiting times average four to six months.