March The Hill here I come!

Thursday, February 21, 2013

Ever since Joel was diagnosed with tuberous sclerosis complex I have prayed that God would help me be an advocate for Joel + others that are suffering from TSC. And oh man, He definitely came through!

Last summer, after participating in our first Step Forward To Cure TSC walkathon, I was asked if I would be interested in becoming the Chair for the TS Community Alliance of the Pacific Northwest. Of course I said yes! (Volunteering for any and all things TS related has been my therapy. It makes me feel like I'm making a difference, even if I can't physically heal Joel.)

Every year the Community Alliance Chairs, Board Members and other supporters and volunteers gather in Washington, DC from across the country to meet with their House of Representatives members and Senators to ask for their support for Federal TSC research funding. This year I will be going and representing the Pacific Northwest (Washington and Oregon)!
If someone would have told me a few years ago that I would be going to Washington, DC to have meetings with Representatives and Senators inside the Capitol, I would have laughed and walked away saying "bless your heart!" I never in a million years thought I would be doing this. (Then again I never thought I would have a child with "special needs" either.) ME.. a stay at home mom..!!!
I have collected letters to give to the Representatives and Senators. The letters are from people in the PNW that are struggling with this horrible disease. I can't even begin to explain how honored I feel that I will be able to hand deliver their letters and advocate for them! I just hope and pray I will find the right words to explain how important federal funding for research to find a cure really is!! 
So, next week if you think about, please keep me in your prayers.. I'm definitely going to need it!

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