Extraordinary measures…the movie

A while back, Jut and I realized that our world would never be the same. We were seeing THE BLIND SIDE a heart-warming movie completely unrelated to MPS. But, the previews reminded us that we will always-the rest of our lives-see things through the eyes of parents facing Sanfilippo. The previews included a message from St. Judes research hospital—reminding parents to be happy for their healthy children. The next was for a movie I don’t remember. And the last one was for EXTRAORDINARY MEASURES. To say the least, we began to tear up and both said we would not be seeing THAT one! However, we are all for raising awareness and this movie will do just that. Days later we received this press release from the MPS society regarding the movie:

January 8, 2010

The Lysosomal Patient Advocacy Organizations, of which the National MPS Society is a member, developed the attached press release to be shared among our families. The movie “Extraordinary Measures”, to be released January 22, is inspired by the true story of John Crowley, a man who pursued a cure for his children’s diagnoses of Pompe disease, a lysosomal disease. We hope the release of the movie will coincide with a national movement among our families to increase awareness about this group of devastating genetic diseases and about the National MPS Society.Information about the movie can be found at http://extraordinarymeasuresthemovie.com/#. On the site are suggestions for increasing awareness through “Tweet across America with Extraordinary Measures”, http://extraordinarymeasuresthemovie.com/#/tweetamerica, and uploading your story to an Inspirational Quilt, http://extraordinarymeasuresthemovie.com/#/quilt. One charity will be selected to receive $10,000 based upon the votes received for the favorite video in the Inspirational Quilt.Let’s join with all families who have a child with one of the 50 lysosomal diseases to increase awareness across the country. Don’t forget to send us an email about your efforts to increase awareness!BarbaraBarbara Wedehase, MSW, CGCExecutive DirectorNational MPS SocietyPO Box 14686Durham, NC 27709-4686919.806.0101 (phone)919.806.2055 (fax)www.mpssociety.org © 2006-2010 National MPS Society. All rights reserved.