Pompe disease - the real story

What you can read here is the story of the development of a treatment for Pompe disease. It is an incredible story, rich with events, characters and science. Above all, it is the story of an international community of scientists, doctors, patients and companies.

It is not, as far as I know, an actual crime to steal a community's history. I don't know if there's even a word for it - but I do know that it is wrong. That is what I find so objectionable about Geeta Anand's book, The Cure and the film based on it, Extraordinary Measures ( you can link straight to the relevant articles covering the events described in the book and film here, here and here).

This blog represents my small attempt to set the record straight. It is written here in roughly chronological order i.e. you'll need to start at the bottom of the April 2009 archive page and work your way up.

It is also a personal account and, although I've tried to make it as objective as possible, there is an inevitable degree of subjectivity. For that reason I have included contributions from other members of the worldwide Pompe community and would be delighted to receive more. Feedback is also welcome.