I recently attended the "Annual Resource Conference" for children with special health care needs, such as Fragile X, and Seizure Disorders. The conference was presented by the Southeastern Utah Health District at CEU and put together by Mae Aguayo.
The speaker, Dr. John Carey, noted geneticist from Primary Children's Hospital did an excellent job of helping everyone there understand genetic research, what is happening in the research on genetics, and why it is important to everyone.
Dr. John Carey, Geneticist; Dr. Francis Filloux, Neurologist; and Dr. Louis Allen, Developmental Pediatrician took time out from the their busy schedules to be available to answer questions during break-out sessions. These breakouts gave us the rare opportunity to interact personally with the specialists, and ask about things particular to our own child's illness.
My granddaughter has Rett Syndrome. This disease affects the neurological system causing a communication failure between the nerves and brain. The prognosis is not good, but several things Dr. Carey told us gave new hope. He told us about Rett research going on at Baylor University. They are trying new treatments we are excited to learn about. He gave us a telephone number for Baylor and also for a Rett support group here in Utah.
If you have questions about your disabled family member, perhaps you can find answers at next year's conference.