3 thoughts on “Resources”

1. Hi Ken. I enjoy the heartfelt way you communicate your journey. You seem super informed so there’s probably not much I can share with you that you don’t already know but I thought of Savanna when I came across this article. It’s about a drug I have followed for years (through trials & studies) in regards to my daughter’s journey with Tuberous Sclerosis. I’m excited to see some positive secondary benefits (seizure reduction) being studied. Anyway, it is an exciting (although scary) drug for the TS community and it might transition over to non-TS epilepsies in the future so I thought I would share. Congrats on Savanna’s 4 months of seizure freedom! Best wishes- Kim

   Btw… the study is a collaboration btwn Cincinnati Children’s & Texas Children’s (Houston). If I remember right… that’s your neck of the woods.

   http://www.newswise.com/articles/drug-shows-dramatic-reduction-in-seizures-in-patients-with-tuberous-sclerosis-complex

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   • Hi Kim,

     Thanks so much for sharing. I did not know about this drug, and found the article very interesting. Do you have a blog about your family’s journey? Yes we are in Houston, just over a year now!

     Warm regards,

     -ken

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2. Ken,
   Is their a way to message you privately on this website?
   -Kim Smith

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