Work That Matters

In February 1998 my wife, Melinda, and I moved to La Jolla, CA, into an apartment one block from the Pacific Ocean. At 32, I’d been hired by Nobel laureate Gerald Edelman to help scientists at the Neurosciences Institute commercialize their research. Having spent 10 years directing an engineering group and developing manufacturing systems and medical instruments, I was excited about learning neuroscience and doing business development.

Ten months later, I got a call from my 29-year-old brother, Stephen, who’d been having problems with his right arm. “The news does not look good,” he told me on the way home from his neurologist’s office. He’d been diagnosed with ALS, or Lou Gehrig’s disease. Two days after that, I resigned.

To paraphrase the first lines of the thousands of abstracts I’ve read, ALS is a uniformly fatal neurodegenerative disease that progressively paralyzes the victim as the motor neurons in the spine die. There is no known cause or cure. Death is usually caused by respiratory failure within two to five years.

On April 19, 1999, our family incorporated the ALS Therapy Development Institute in my parents’ basement. With much encouragement and support from the MIT community, we have built what I believe is the world’s first nonprofit biotechnology company, focused on developing treatments for today’s ALS patients without regard to publications, profits, or prestige. We hired the best from the biotech industry, removed the constraints that bind research, and concentrated on a single goal: find a treatment–or a cure.

Nearly nine years later, ALS TDI runs the world’s leading ALS research program and is seen as a model for addressing the therapy-development gap between aca­demia and business. We built a rigorous drug validation program and brought new standards of quality to our field. This year, we hired a new chief scientific officer and five top researchers from Biogen to take the disease apart piece by piece until we know how to stop it.

But we did not find the answer in time for Stephen.

Even though ALS took Stephen’s ability to walk, hold his son, speak, and ultimately breathe on his own, he lived life on his terms. Always close, our family grew closer and stronger. Together we developed technologies that enabled ­Stephen to keep working as a craftsman builder and to remain in command of his world. Together we tracked down the best available information on treating and coping with ALS. Seeing how that enhanced Stephen’s quality of life, we wanted to give all patients with life-changing diseases that kind of information. So with my youngest brother, Ben ‘93, and Jeff Cole ‘93, SM ‘95, I founded PatientsLikeMe to enable the sharing of disease-specific experiences and outcomes. We’ve created online communities for ALS, MS, Parkinson’s disease, and HIV and plan to expand dramatically in 2008.

In all, the past nine years have been mostly joyful. Although Melinda and I are no longer married, we remain friends. I gained a daughter, a nephew and niece, two ­sisters-in-law, and a new girlfriend. But I lost Stephen.

At 5:30 a.m. on November 25, 2006, I received the call I had gone to bed each night hoping I’d never get. When I arrived at Stephen’s, his quiet street glowed with the flashing lights of two fire trucks, an ambulance, and police cars. Inside, I went past his wife, Wendy, gripping their son tightly in her arms; I found Stephen in his bedroom. His ventilator had accidentally disconnected, his lips were blue, and despite aggressive CPR, he looked peaceful, with even a slight trace of a smile. After nine years with ALS, Stephen was gone.

In 1949 Martin Luther King gave a sermon on civilization’s greatest needs. “Our material and intellectual advances have outrun our moral progress,” he preached. “It is not enough to have the power of concentration; [we also need] worthy objectives upon which to concentrate.”

MIT gave me the power of concentration. In teaching me to understand gears, circuits, proteins, and software, MIT also gave me the skills to understand the human systems that direct our world–and perhaps to improve them.

I have been given much in my life. But Stephen gave me the greatest gift of all: something worthy to concentrate on.