January 10, 2008

$4 Million for TSC Research in 2008

Our contribution to a congressional lobbying effort paid off! Last year Rob and I were part of a group lobbying Congress to raise funding for Tuberous Sclerosis Complex (TSC) research for 2008.

We visited several Congressional offices and told our story while trying to impress upon the staffers (it's rare to actually get an appointment with a Congress Representative, but the staffers have their ear) how important TSC research funding is. This is a little tricky because you have to begin with a definition since most people have never heard of it. About 50,000 people in this country have been diagnosed with TSC so it is relatively rare. Interestingly, that's about the same number of people diagnosed with Lou Gehrig's Disease.

It was a long haul, but in the end, $4 million was provided to the Department of Defense Tuberous Sclerosis Complex Research Program. The money will be used to promote innovative research focused on lessening the impact of TSC. This program is administered by the US Army Medical Research and Materiel Command through the Office of the Congressionally Directed Medical Research Programs. It's so interesting to see where funding originates.

I am so happy to know that there are strides being made and am proud that Rob and I were able to take a stab at being lobbyists. There was no funding approved for 2007, so $4 million for 2008 is a huge step in the right direction. Nobody should have to live with this debilitating condition.


Anonymous said...

How wonderful! This is really something to be proud of, an something that will hopefully be a step on the road to helping many other families. You guys are amazing.


Mary said...


And "congratulations" to Evan for getting his card.

Love you all!