Definition of Escape: An act of breaking free from confinement or control
Every year my employer, Edelman, offers a program to its employees to “escape” the office and follow a dream they otherwise would not get to pursue. If you win, you get $1,000 and a week sabbatical to make this dream happen. I kind of think I work for a pretty cool company and I’m not just saying that J
On a whim, I decided to apply. My big escape, the United Mitochondrial Disease Foundation annual symposium and Capitol Hill day. My application was unanimously voted in favor for and I am one of 10 winners for the 2012 Edelman Escape program.
I am humbled, honored, ecstatic, nervous, nauseated and pretty happy that we get to do this. To be able to talk directly to legislators that influence where and how monies are applied for disease funding is phenomenal. While my sneaking suspicion is that many of our elected officials don’t care too much about what their constituents have to say on the matter, at least not as much as they do what big pharma or big money says they should do, I still am very proud to get to speak on behalf of Will and others with Mito.
In addition to
giving these legislators a piece of my mind asking them to fund Mito projects, Neil and I are both going to attend the symposium and get to network with other doctors, researchers, parents and families. I pretty much started crying at the thought of being able to connect with others in this world. (reference, special needs parenting post, “it’s lonely”).
This is something that could give Will the extra leg up when it comes to new therapies, tools, trials, studies or supplements. I think I need to work on managing my expectations, no one is going to unveil the cure for Mito at this conference, but hopefully one day I will be able to attend one that does.
While we are in Washington D.C. we’re going to meet up with some good friends that moved there for work so the trip will include some fun too!
If you are planning to attend, please let me know as I’d love to find some time to visit.
Will at age 15 months above. In the bath tub and on the couch. He sure has thinned out!