Next Friday, January 22nd the film, Extraordinary Measures, will be released. It follows the story of John and Aileen Crowley’s desperate search for a treatment for their two young children affected by Pompe disease, a fatal lysosomal storage disease related to Tay-Sachs disease. The film will star big hollywood names such as Harrison Ford, Brendan Fraser and Keri Russell. It is sure to increase awareness of rare diseases and the struggle to find hope. The film captures the isolation, desperation, and determination felt by families with children afflicted with rare genetic diseases. Ferd and I couldn’t believe it when we first saw the previews 2 months ago as all we can say at that moment was “Oh my gosh, that’s us.” John Crowley, who Brendan Fraser plays, is a former board member of NTSAD (National Tay Sachs & Allied Diseases) which we are members of. This film chronicles his journey to find the miracle that will save his children. Another suggested movie that you can watch which will give you an idea of rare diseases somewhat similar to Tay-Sachs is “Lorenzo’s Oil” starring Nick Nolte and Susan Sarandon. I have to warn you though that this can be a little depressing, but inspiring. I invite you all to see “Extraordinary Measures” and feel free to share your throughts of the movie with us. Thank you for always continuing to pray for Gavin and our family.

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