Go to the Movies

Now that I have been officially been diagnosed with Pompe Disease, I’m going to the movies and I ask that you do the same. Go see Extraordinary Measures this weekend starring Harrison Ford, Brendan Fraser and Keri Russell. I haven’t seen the movie yet, but I understand it was inspired by the true story of Matt Crowley who fought for a the development of ERT for his two children when they were diagnosed with Pompe Disease.

I hope this film will help spread awareness of this rare and relatively unknown disease. If nothing else, when was the last time these three actors made a movie that sucked, you’re at least in for a good flick right? What do you have to loose? And maybe, just maybe you’ll gain a little insight into what I’m going through. I don’t know, like I said I haven’t seen the movie and the disease effects everyone different and really effects children and adults differently, but I do believe it will help raise awareness for Pompe Disease so grab a friend and go to the movies.



  1. So again, I know i am way behind the curve, but just put this on our netflix que and if I can find the movies that were floating around while i was gone, we might have it by this weekend…..

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