At the beginning of March I once again had the amazing opportunity to attend March The Hill with the TS Alliance in Washington, DC. I went last year and represented the entire Pacific Northwest. (You can read about it here.) This year I represented Ohio and Kentucky with a few other people.

Traveling while pregnant made me nervous but everything went smoothly and I had a great time. It was fun to see friends from last year--friends that I usually only get to communicate with via FB--and exciting to make new friends this year. I hate that Tuberous Sclerosis is the reason we met but I'm thankful to have these people in my life. It gives me a sense of peace in knowing that even if something happened to me and I was no longer able to advocate for Joel, there are still so many amazing people that are willing to be his voice and fight for his cure.

Whenever I come home from these trips I always feel empowered and honored to be able to advocate for Joel and others fighting TSC. There are not enough thank you's in the world that I could give to the TS Alliance for allowing me to attend March The Hill with them.

a few members of the TS Alliance of Ohio with Senator Sherrod Brown 

March The Hill here I come!

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!