Today I felt very brave. Today I felt like shouting. Today I wanted everyone in the world to know that people have Cowden’s Sydrome – and sometimes it is OK, and sometimes it sucks. I wanted to raise awareness, and to touch some folks who may need an ear. This is my way. This is my outlet. I can only hope it helps someone. So, I will continue to post here, but I will link all my posts to the Facebook page with the same name – “Beating Cowden’s.” Hope to see you there!
beatingcowdens 
That is awesome! I fully agree about getting our voices heard. This is why I took to Twitter to raise awareness about Cowden’s/Lhermitte-duclos/rare diseases. Way to go!
I’m there! So, so happy you decided to share this!
PS. Someone found my blog searching, “Cowdens Syndrome support groups” AND “Beating Cowdens”! Have you ever checked your search term hits? 🙂 You should get business cards made up because the title you chose is AMAZE balls! Really! 🙂
Sorry to blow up this with all my comments…but you’re still going to update here too right?
No worries… first to wordpress, then the link to facebook!