I thought that if anyone happens upon this blog who either has RS or parents a child with RS I would share our doctor. He is a wonderful and caring doctor who works out of CHOP. He is considered one of the best pediatric neurogeneticists in the country. While he doesn't specialize in RS if you lived locally he is a wonderful doctor. You can find him by going to the CHOP website and visiting the Neurology page. Our doctor is Dr. Carsten Bonnemann. He is somewhat difficult to get an appointment with because of his reputation but he is well worth the wait.