My Brother’s Keeper

About five years ago, I wrote an article about Matthew During, a gene therapist at The Jefferson Medical College in Philadelphia, who was working on several novel experimental therapies for a range of diseases including ALS (Lou Gehrig’s disease), stroke, and Parkinson’s disease. I had previously encountered During at a meeting I was covering for the Hereditary Disease Foundation, so I knew he was somewhat of a “cowboy,” full of energy and impatient with the slow pace of and restrictions on research. At one of the HDF meetings, I also met Jamie Heywood, who had founded a non-profit drug development foundation to find therapies for ALS. Another “cowboy,” Jamie (who is an engineer by training) was even more impatient, since his brother, Stephen, had been diagnosed with ALS in 1998. Thus, I was really interested in My Brother’s Keeper, which chronicles Jamie’s story as he tries to circumvent the normal scientific process with the help of Matt During. The story is so compelling, as Jon Weiner found while doing research for an article for The New Yorker, and subsequently for this book. It was hard for everyone (Weiner included) not to get caught up in Jamie’s passion and his belief that he could do anything with enough money and effort. In the end, however, science refuses to yield. The complexity of ALS and other neurodegenerative diseases seems to always overcome quick and easy solutions. Jamie continues his somewhat manic pursuit of solutions but sacrifices his family, while Stephen lives his life as best he can (he marries and has a child, despite his worsening disability). While there are no answers for the frustrated and impatient people who suffer from these terrible diseases, the book confirmed for me that the slow but steady pace that research normally follows is necessary and valuable; and that the human spirit survives even in the face of horrible circumstances.