Please check out Stephanie Hunt's page - Former Mrs. United States. Stephanie has a son with RTS. February 28th is being set forth as Rare Disease day in many states. You can sign the petition and also find a sample letter to email to your governor to get your state involved!
I already emailed our Governor, Rick Perry. The more the better!!
For Texans you can click this link to email the Governor
Please help us draw attention to the many Rare Disorders out there affecting our children! You are reading this blog so you know someone who is affected by a Rare Disorder - in Frankies case its RTS Rubinstein-Taybi Syndrome. Help us make a difference!!! Please spread the word
http://www.stephanie-hunt.com/ Stephanie Hunts page
http://www.stephanie-hunt.com/nord.htm Link for Sample Letter