and Rett Syndrome

[Guest guest]

According to a newspaper article of May 10, 2002, actress appeared

before Congress (the House Appropriations Subcommittee responsible for public

health spending) on behalf of Rett Syndrome. Rett Syndrome is a neurological

disorder affecting girls, and knew a 10-year old girl with it.

According to the article, research on Rett Syndrome currently gets $3.5 million

in federal funds; asked Congress the increase it to $15.5 million.

Is there something we should be doing to get funding for CHARGE Syndrome? Do we

need to find a famous movie star to go to bat for us? Should we be writing our

Congressmen and asking for funding?

-Mike Schwartz in Ventura, California, father of 4-year-old twin boys

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