A Tribute to the Women of Rett Syndrome

I hope the parents of older girls and women will share their stories and their experiences and perspectives. Researchers do care about your daughters. It is their greatest ambition to bring treatments that will affect their quality of life in meaningful ways. It is these courageous women who have laid the basis for all of the natural history of Rett syndrome that provides the understanding we now have and which leads research. Parents of women with Rett syndrome are the pioneers who have struck a path for all of us. The parents of older children didn't have a Rett Syndrome Handbook or a Rett Clinic, only their instinct, intuition, guts and determination. And unending love. They rallied for special education when there was none, then proved that inclusion could work. They lobbied for laws to protect their children's rights when there were none and for laws that allow them to get benefits like Medicaid and SSI. They held yard sales and dinners to raise money to find the gene for Rett syndrome. They answered detailed surveys, submitted their children’s histories, and participated in ground level basic research. They continue to lead us today with their knowledge and experience, and inspire us with stories of love and devotion.

Kathy Hunter