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!
Lori, that is so awesome!! You continually amaze me with your ability to make a difference. Your a lady who knows how to get things done. You are so deserving and I am so happy for you that you were selected- what a cool perk to your job.
ReplyDeleteOops...you're not your :)
ReplyDeleteLori -- I am so excited for you and Neil. And proud that Edelman has such cool programs!
ReplyDeleteCarolyn
What a fantastic opportunity for you, Neil and Will and the opportunity to tell your story. Kudos to Edelman to believe in their team and their dreams. MsV
ReplyDeleteThat is awesome..what a cool company!
ReplyDeleteLori, that is so cool...I am glad your company realizes the importance of it's employees feeling respected for their whole being...not just the skill set needed to make them money. I know you guys will totally rock those legislators into caring about what is really happening in the world of 'rare diseases'. So great you guys...I will sent good thoughts your way.
ReplyDeleteSheila
Way to go, Lori! This is by far the coolest thing I've heard all day. When do you go? Can't wait to hear more about it.
ReplyDeleteJennifer
Awesome Lori! Hudson may be in treatment in Maryland then so I may hop over to the Symposium as well! If I can break out of Kennedy Krieger we'll have to meet up!
ReplyDeleteSo excited for you!
ReplyDeleteHow wonderful. You will make a difference there. I'm so happy for you and impressed with the company you work with. And I love the pictures... more of those, please! He is and was SO cute!!!
ReplyDeleteWe go in mid-June. It's an exciting time right now in the Mito world. It feels like they are on the cusp of breaking through the noise. We shall see.
ReplyDeleteNikky - that would be awesome to meet up if you can break out of KKI. I'd love to see you, but I'm hoping that you won't be able to come because Hudson will be too busy eating some applesauce.
Hey guys, I will still be here in DC for the Clemens trial in June. Let me know how I can support you in addition to buying you dinner one night while you are here. I miss seeing Will across the street!!
ReplyDeleteStacey,
ReplyDeleteWe'd love to meet up! Can you send me a private email and we can coordinate details? Will asks about you quite a bit and still enjoys visiting your front porch steps. :-) Lori
That is soooo cool, and so awesome of your company to do that! I have three brothers who live in DC near Union Station, so if you are putting together a night out and want to meet some new people, let me know and I'll hook you up with them. They're awesome :-)
ReplyDeleteThis is great news. Knowledge is power. You are bound to learn something new that might help from networking with other parents, and attending the conference, and those legislators will learn a lot from you! Adore the chunky pic of Will. so. stinkin. cute.
ReplyDeleteXOXO
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I will be attending the symposium and day on the hills, let's try to meet when we are there if you want!
ReplyDeleteI can't imagine anyone more deserving. Congrats
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