update on NYC marathon

Hello everyone.

Please let me start by expressing my deepest gratitude to all of you who have supported our cause.  We have raised over $233,000 to date, but we still have a long way to go to reach our $500,000 goal. 

A lot has happened in the 8 months that I have been training for this marathon, we have put together a wonderful team of runners that are all amazing people .  Our team of 14 people is a mix old college friends i havent seen in a while, friends from my last company in seattle, new friends in denver, and friends from the mobile industry.  It is truly inspiring to me that so many folks have dedicated themselves to this cause.  Let me tell you, it aint easy, but that is why i run.

Our family has learned a great deal about this horrible disease in the last year.  A few months ago, we attended the Parent Project Muscular Dystrophy conference in Philadelphia.  This was a gathering of families affected with Duchenne Muscular Dystrophy, and the most brilliant minds around the world that are tackling this problem.  And of course, there were the boys with Duchenne. Almost all of them fit the same profile--teenaged boys, in full powered wheelchairs, all with very puffy faces from chronic steroid use over the years, most unable to lift their arms for very long if at all, some on ventilators, and many have had multiple back surgeries.  It really hits home when you see these boys, and it gives me a combined feeling of saddness for them, and resolve that Jake wont end up like that.  I know that the odds are long against us, and the same cycle of hope went through all the parents of those boys, only to be dissapointed, but now it is different, and that is why I run.

The good news from the conference is that research on treatments is really coming along, and the entire research community is optimistic that we will be able to make great strides to slow down the progression of the disease within the coming years, and keep Jake walking.  That is why I run.

 

Right now, we are in what they call the "honeymoon phase"  with Jake.  He is still very much able to walk, and even run, just not as fast as the other kids.  We know this will keep up for another couple/few years, then he will start to plateau, and then degenerate.  but we wont let that happen, That is why I run.

We just got back from Cincinatti Childrens Hospital, where they have the best MD care clinic, and who we think is the best doctor in the country, Brenda Wong.  We will bring Jake there once a year to be evaluated, its really a tough time for Jake over a couple of days, but is a trooper and he makes the most of it.  That is why i run.

But most of all, I run for the Jake's future and for the wonderful families we have met who are also affected, the Knights, the Killians, The Dunnes. the Brandoms, the Dengers and for people like Pat Furlong, who will not rest until this disease is cured.  I run because Jake's life and the life of these children depends on it.

So please, if you have not already made a donation, visit our website at www.firstgiving.com/brianlevin

or send a check to

Foundation For Their Sake
5 Cherry Hills Farm Ct
Englewood, CO 80113