Paul Kahn had recessive centronuclear myopathy but despite using a power wheelchair, a ventilator and progressive respiratory problems, which prompted him to get a tracheostomy, this did not stop him from having a productive career as a writer.


Paul began experiencing symptoms during early childhood and was diagnosed with centronuclear myopathy in his 30s. Kahn’s neurologist indicated that his symptoms were consistent with the autosomal recessive variant but couldn’t define the type with certainty. However he always maintained an independent, active life and worked as a successful writer and playwright.

Paul interviewed renowned scientist Stephen Hawking, was the author of books about children with disabilities, editor of several newsletters, painter, community organizer and an experienced counselor who has used his skills to help MDA develop local support group programs in the Boston area.

As a child, Paul wasn’t always certain what to expect from MTM. ‘This is such a rare disability that it was difficult for anybody to predict what was going to happen [to me],’ he said. When Kahn was 6 years old, his 9-year-old brother died from respiratory complications of MTM. On top of his personal loss, Paul dealt with fear that his condition would follow a similar course but was always hopeful that increasing knowledge about MTM would have a positive impact on future generations of young people.

At the time of writing Paul’s body of work included some 17 plays and scripts, poems, 7 books, 25 articles in national publications, 9 awards and grants and numerous community activities.

Paul Kahn, passed away 1 January 2010, of respiratory causes, aged 64.