ALS continues to ravage lives, but hope for a cure endures

As a young medical resident, Dr. Robert H. Brown Jr. wrote an important piece of personal history in the Ether Dome, the famous surgical amphitheater at Massachusetts General Hospital.

That was almost 40 year ago.

In his mind’s eye, he can still see himself, a young guy in a white coat presenting a case of a patient suffering from amyotrophic lateral sclerosis, or Lou Gehrig’s disease.

It’s what happened after he left the Ether Dome and entered an elevator that changed his career’s trajectory.

Dr. Raymond D. Adams, the long-time and legendary chief of neurology at MGH, stood next to Brown that day. “He leaned over and said, ‘Bob, ALS is terra incognita,’ ‘’ Brown recalled. “It was like the heavens had opened. And God had opined.’’

Dr. Robert H. Brown Jr. is at the vanguard of ALS research, where he has become an internationally known and groundbreaking researcher. (Thomas Farragher/Globe Staff)

That catalytic moment helped launch Brown into the vanguard of ALS research, where he has become an internationally known and groundbreaking researcher. In 1993, he led a team at MGH that discovered the first gene linked to the inherited form of ALS.

After 32 years at MGH, he has moved to UMass Medical School, where I found him this week still as charged up as that young man in the Ether Dome; still determined to find a treatment for a disease that has none, a scourge that each year terrorizes 5,000 new patients in the US who receive its death sentence.

“I am completely confident that the technology is out there that will turn off these ALS genes,’’ Brown told me this week as we sat in his office in Worcester. “We’re working aggressively. The human trials have started. It’s an inch here, a millimeter there.’’

If you know someone with ALS, that confidence is nothing less than a beacon of hope in dark medical seas.

When I was a kid, there was a judge in my hometown, a beloved figure who started the housing court in Worcester and worked to ensure that mentally ill people were not denied justice.

His name was Morris Gould, and his son Chuck, now a Newton lawyer, was a friend of mine, and the youngest of Judge Gould’s six children. After the judge was diagnosed with ALS in 1973, Chuck invented a communication device the size of a large desk calculator that allowed his father to reach out to the family he loved.

“He was completely alert and he knew that we were there,’’ my old pal told me this week. “So much time has gone by since then. But there will be a breakthrough. We never give up hope. They’ll get this.’’

excerpt © 2016 Boston Globe Media Partners, LLC. All rights reserved.