Skip to main content /POLITICS

Julia Roberts chokes back tears before Congress

Actress lobbies to boost funding for Rett syndrome

WASHINGTON (CNN) -- Oscar-winning actress Julia Roberts emotionally appealed to Congress Thursday to boost federal funding to research Rett syndrome, a neurological disorder that prevents its victims from communicating or controlling their body movements.

Roberts joined about 20 families representing the International Rett Syndrome Association, or IRSA, before a subcommittee of the House Appropriations Committee.

The group is seeking $15.5 million in funding to examine Rett syndrome and related disorders for fiscal year 2003.

"Congress has within its power the ability to provide the accelerated funding needed to increase our understanding of Rett syndrome," Roberts testified.

Often misdiagnosed as autism or cerebral palsy, Rett syndrome usually appears in children between the ages of 6 months to 18 months and is found predominantly in females.

Those afflicted with the disorder often have problems communicating, seizures and disorganized breathing patterns.

Roberts became involved with IRSA after narrating a documentary called "Silent Angels: The Rett Syndrome Story."

Actress Julia Roberts asks support for research into Rett syndrome, a disease that attacks girls and young women (May 9)

Play video
Rett syndrome facts
  • Leaves victims unable to communicate, control body movements
  • Also characterized by seizures and disorganized breathing patterns
  • Found predominantly in females
  • Often misdiagnosed as autism or cerebral palsy
  • Usually appears between age 6 and 18 months
  • Linked to mutations in MECP2 gene
  • Her sister, Lisa, introduced the actress to Abigail Brodsky, who was featured in the film and recently died from complications related to the disorder at age 10. Roberts choked back tears Thursday as she recounted Brodsky's story.

    Scientists have made major progress in Rett syndrome research in recent years, discovering that girls with Rett syndrome have mutations of the MECP2 gene -- which is critical to the development of a healthy brain.

    "There is an urgent need now, with this gene discovery, to redouble the efforts of researchers and capitalize on their important and steadfast work," Roberts said.

    The finding contributed to the recognition of a new class of inherited neurodevelopmental disorders based on MECP2 mutations, such as autism and severe mental retardation, Dr. Alan Percy said Thursday.

    "There is growing excitement among scientists, and increasing awareness that investment in Rett syndrome research will pay handsome dividends in understanding this and other chromatin disorders," said Percy, who testified on IRSA's behalf.




    Back to the top