Capitol Hill Week

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This was my fourth year going to Washington DC to lobby for Tuberous Sclerosis Complex research funding and was by far the most amazing! This year my entourage included Chris Hawkey, Sarah Hoey, Janie Frost, Todd Kronebusch and Judy Shoulak. Because of scheduling we were not all together at one time. We covered the legislators from Minnesota, Mississippi, North and South Dakota. In a day and a half we visited 15 offices that included;

• Rep Gregg Harper of Mississippi
• Rep James Oberstar of Minnesota
• Rep Colin Peterson of Minnesota
• Sen Amy Klobuchar of Minnesota
• Sen Tim Johnson of South Dakota
• Sen Roger Wicker of Mississippi
• Sen Al Franken of Minnesota
• Rep John Kline of Minnesota
• Rep Travis Childers of Mississippi
• Rep Earl Pomeroy of North Dakota
• Rep Betty McCollum of Minnesota
• Rep Erik Paulsen of Minnesota
• Rep Tim Walz of Minnesota
• Rep Keith Ellison of Minnesota
• Sen John Thune of South Dakota

When I say that we met with them I mean that we meet with the person from the office that handles health related issues. But this year we were able to get 20 min sit down with Sen Al Franken and it was a great meeting! He had read the materials I sent ahead of time and asked me questions about Alan's personality, sense of humor, school, how he is effected by autism. In the four years I have been going to Washington I have never had this happen, even by offices I knew would sign on!

That night was topped by an amazing event, DC Food and Wine at Morton's Steak House. The food was amazing! I don't think that I have ever seen shrimp that big before!

Thursday morning were great sessions on utilizing the media and programs that our national sponsors, Hat World Lids, Buffalo Wild Wings, Lundbeck and MetLife have or launching for the TS Alliance. There are a lot of great things coming!

Thursday night was a magical night! Every year on the last night of our trip the TS Alliance has a Volunteer Appreciation Dinner. This year I was the recipient of a "Franny" Award, which is given to four individuals each years for their work in their TS community and nationally. I was blown away! I wish I could better put into words the rush of joy, gratitude and amazement when I figured out that Jenny Smiley was talking about me. You will just have to take my word for it.

My favorite quote of the week came later when Tommy Linsey of New York was receiving his outgoing board of directors award. In my acceptance speech I said, "I am a Minnesota Vikings fan (to which there quite a few chuckles) and I have faith that I will in my life time see the Vikings in the Superbowl, I also have faith that we will one day we will find a cure for TS, better treatments" Tommy during his acceptance speech said,"We're going to kick Tuberous Sclerosis ASS before Missy gets to the Superbowl!" I hope he is right!