Why isn’t it okay to produce a film that is about perseverance, strength and courage?
I have the good fortune of having been in many discussions with John Crowley. I have read his book ‘The Cure’ and have seen the movie – Extraordinary Measures. I have come to view John Crowley as an incredibly vigilant parent that will go to the ends of the earth to help his children.
His story is like many of the stories that we hear everyday. The same story of fear, isolation, anger, perseverance, strength, courage, hope and faith. The difference in this case is that the Crowley’s had the financial means to take their advocacy to the next level.
While I read and listen to movie critics rip apart the movie for what it ‘didn’t’ do, I would like to challenge all of them to look again at what it did accomplish. And especially for the rare disease community! A community that impacts over 30 million in the US alone is vast, far reaching and deserving of a movie like this. Did it accomplish what it intended? . . . I think so.
I would say that it has inspired many parents to take action, it has created greater awareness about the prevalence of rare and genetic diseases and has helped bring the needs and challenges this community faces to the for front. Why isn’t that enough?
Ford and Frasier did a great job in the movie, and signed on to support this movie with a much smaller fee then they normally command! Why aren’t we discussing how grateful we are to actors like them who go above and beyond to help tell an important story to the world.
I applaud their efforts, the Crowley’s & CBS Films for their commitment to this film and to the rare disease community. I encourage the rest of those supportive of the rare disease community to support this film!
Nicole Boice
Founder, Global Genes Project
 

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