A diagnosis of the dreaded and still incurable Lou Gehrig’s Disease, or ALS, comes for most patients as a death sentence. For Stephen Heywood, still in his 20s when he got the bad news, and for his brother James, it was a call to battle.
It was a call to search past the Internet and the best specialists they could find, a call to meet and interview the underfunded researchers in the field, a call to form a foundation and their own fund-raising network. It was a call to plumb the genomic depths of the illness and the chance of a gene treatment to cure it.
In The New Yorker magazine and on “60 Minutes-2″ the Heywood family’s stand against ALS strikes inspirational tones that are disquieting, too: is it for lay pioneers, guerrilla scientists, to set the direction of medical research? Is every patient to be his own NIH? Is gene therapy a rational choice? And whose job is it not to keep false hope alive?
(Hosted by Christopher Lydon)
Guests:
Stephen Heywood, ALS patient
James Heywood, his brother