X job. "We did our best to give her the experiences Of a normal childhood," Sandy says. "The disease usually does not affect the child's cognitive abili- ties so that Rachel was able to attend school when times were good. She had many friends and managed to keep up with her age group. - "It was our powerlessness, our inability to do anything for this child that was most difficult to accept. Without the support of our family and friends, we never would have been able to handle this by our- selves," Sandy says. Chicago has one of 15 chapters of the Dysautonomia Foundation, which is headquartered in New York. Dr. Alicia Axelrod, director of the Dysautonomia Treatment and Evaluation Center in New York, is the world expert on the disease. Founded in 1970, the center was established to cen- tralize care and conduct clinical research so that significant statistics could be obtained regarding effectiveness of vari- ous treatments. In addition, the center serves as a resource for parents and physicians. In 1985, a second site funded by Hadassah was established in Israel. Today, every child in the world diag- nosed with dysautonomia becomes part of Dr. Axelrod's database. "We need to continue funding the research until they find the gene and figure out how to treat FD," says Dr. Axelrod. "We also need to continually alert the medical community about this population because there is no cure for dysautonomia and the terri- ble side effects can be avoided and reduced once the diagnosis is made." Huge strides have been made. Several adults with FD are now living into their 50s and, with genetic test- ing, 59 healthy babies have been born to at-risk parents. Val Baker, former president of the Detroit Area Dysautonomia Chapter, wants to reactivate the local group. "All we need are a few people who have the interest and will volunteer their time to put on an event to raise money for continued research," says Baker. "That's what this chapter does. We support our friend. and families by providing funds for research. I'd love to get this project going again." ❑ X, 3160 H AG ERTY ROAD • WEST BLOOMFIELD TP