My name is Kim Kubilus, I'm the director of family services for National Tay-Sachs & Allied Diseases Association (NTSAD). I am very sorry your daughter Stacey has Tay-Sachs. I can connect you with lots of other families, help you understand symptom management options and current research efforts. Please email me at Kim@ntsad.org or call 800-906-8723. I and the entire NTSAD family is here to help. You are not alone!!
Hope Stacey is having a lovely day!!
Hugs and prayers,
at 10:29 AM on May. 25, 2010