3/26/2004 » Rants

A young woman died recently just walking down the street in my neighborhood by stepping on a metal plate that electrocuted her. At first it felt like random big city death: falling air conditioner. Jet engine. Skylab. But an investigation by the electric company found that electrified utility covers are commonplace in NYC, and these kinds of deaths have happened before. Bureaucratic inertia.

Her father, VP of Ops at a blade server manufacturer, is working on inventing a failsafe device to prevent this from ever happening again, and on forcing the utility to fix it. It's the 'Lorenzo's Oil' solution. It's Travolta in 'A Civil Action.' It's 'Erin Brockovich.'

Every time I hear about something like this, it makes me want to stand up and cheer. It's the finest in entrepreneurship and Yankee ingenuity. I've always hoped that if I or my child were afflicted by a serious, evitable mishap or disease, I would figure out a way to make sure that problem was solved. Permanently.

Parents in Silicon Valley, which mysteriously has lots of autistic kids, are tackling the problem on their own:

For Dov's parents... Silicon Valley is the only place on Earth with enough critical mass of supercomputing resources, bio-informatics expertise, genomics savvy, pharmaceutical muscle, and VC dollars to boost autism research to the next phase. For six years, the organization they founded, Cure Autism Now, has led a focused assault on the iron-walled fortress of the medical establishment, including the creation of its own bank of DNA samples, available to any scientist in the field...

There was essentially no substantial funding of spinal-cord research before Reeve’s injury, and now it is one of the hottest areas in neurobiology.

''We're getting people locally who are deployed National Guard and parents, specifically, coming in and buying...''

Turning grief into action, Hart cobbled together a loose network of soldiers, their relatives, politicians, and defense contractors to pressure the military to beef up its Humvees. Since his son's death, Hart has seen results... Hart's headway is remarkable for how quickly he has navigated the byzantine military-procurement system. Senator Edward M. Kennedy... believes the father's success can come only from a parent who "feels a desperate sense of loss that he doesn't want it to happen to another parent."

'It's better to ask for forgiveness than permission.'