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
http://governor.state.tx.us/contact/assistance.aspx
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.thepetitionsite.com/1/rare-disease-awareness-day Petition
http://www.stephanie-hunt.com/nord.htm Link for Sample Letter
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