The man is John Hastie. On his 30th birthday, he would get a crazy idea, as he so aptly puts it. He would plan and indeed went on to make a film about people who suffered from Duchenne. People who, despite being crippled from the neck down and consigned to a life in a wheelchair, still led a fulfilling life. In the film, John would go and meet some of the most brilliant and independent people I have seen on celluloid, many who were told they would not live beyond twenty but with some help and determination, are living well in their 20s, 30s and 40s, doing things that were not thought possible before.
It was an inspiring film, not just for Duchenne, but for anyone born into any form of disabilities. More information about the film and the disease can be found on John's website.