Letters from Julia Roberts and Kathy Hunter . Tell your friends about Rett syndrome. Let them know that RS has a genetic cause that may be treatable and preventable.
Research is the key to greater understanding.
Have your friends tell others about this long-overlooked disorder. There are probably 8-10,000 girls in the U.S. with Rett syndrome who are misdiagnosed, usually with autism or cerebral palsy. Tell your doctor and others in the medical field about Rett syndrome. Chances are good they have never heard of it. Understand the plight of the family who has waited years, even decades without answers for their child's regression.