Wednesday, December 30, 2009

Don't Hope For A Miracle. Make One.

Hello everyone,


Please mark your calendars. On January 22nd, the movie Extraordinary Measures will be in theaters. This is the story of John F. Crowley's search for a drug to save his children's lives who were diagnosed with Infantile Pompe Disease.


The movie website is http://extraordinarymeasuresthemovie.com/. Be sure to check the site for the trailer or on YouTube. http://www.youtube.com/watch?v=Q3WCVWHJzaI


While we are not related to John F. Crowley (as far as we know today) the story and timing of the movie release are nothing less than serendipity. We hope the attention and success of this movie will continue to raise awareness of Pompe disease and lead to improved therapies and patient support.


We were in New York City this week and everywhere we turned Maddie spotted a sign promoting the movie. Here's a photo we thought you'd enjoy.


We wish you and yours a Happy New Year!
Matt and Donna