For ALS medical scientist, finding a cure is personal

Zack Kennedy in his lab at the Albert Sherman Center on the UMass Medical School campus in Worcester.Lane Turner/Globe Staff/Globe Staff

WORCESTER — He’s a medical scientist, a young man performing cutting-edge research that may help save the lives of the people he loves most, members of his large family who broke into proud applause the other day inside an amphitheater here.

For Zack Kennedy, the research he is performing at the University of Massachusetts Medical School here is not just academic. It’s not dry-as-dust, white-coat work inside laboratories with microscopes, and test tubes, and petri dishes.

It’s personal.

In fact, it’s a matter of life and death.

“It keeps you motivated,’’ he told me the other day at his workspace here just after he defended his doctoral dissertation in front of a panel of leading researchers, as well as students, family, and friends. “It keeps you focused. You wake up every day and you feel lucky to do the job you do. That’s a blessing.’’

Considering his family’s medical history, it’s also something of a miracle.

“Zack is certainly studying to save his family,’’ Dr. Robert H. Brown Jr. said. “It’s unusual to have a student so focused on a problem which is so immediately relevant to his own family. But, of course, what Zack does will have much broader implications than just for his own family, which makes it even more wonderful.’’

Dr. Brown is the internationally known, groundbreaking researcher who has devoted his professional career to combat the cruel disease known as amyotrophic lateral sclerosis, or Lou Gehrig’s disease.

In 1993, Brown led a team at Massachusetts General Hospital that discovered the first gene linked to the inherited form of ALS. That usually fatal degenerative neurological disorder has claimed the lives of Zack Kennedy’s grandfather and one of his uncles. Zack has not inherited the gene.

Some 6,000 people in the United States are diagnosed with it each year, according to the Massachusetts chapter of the ALS Association. Some 10 percent of those have inherited an ALS gene. The disease affects the motor nerve cells in the brain and spinal cord, gradually robbing patients of the ability to speak, eat, and, finally, breathe. Despite the best efforts of doctors and researchers, the disease still kills most patients in three to five years.

“It’s highly poignant and motivating even to see a young person commit himself to tackling technologies to treat a disease which has so riddled his family, and will continue to if some innovation isn’t brought into the clinic soon,’’ Brown said.

Before I get too far along here, allow me a moment of full disclosure.

Zack Kennedy and his family are friends. He and my son are lifelong pals. They graduated high school together and played head-banging music together in a local rock band.

And when Zack married the lovely Samantha von Zirpolo in Gloucester four years ago, I received a one-day, state-issued license that granted me the authority to officiate at their wedding. That’s a singular honor I’ll never forget.

In my mind’s eye, I can still see the little kid whose socks never matched, whose backpack always went missing, who was always running late and never shed his trademark devil-may-care smile.

That’s not the person who showed up the other day in that amphitheater.

No, that guy was the master of his subject as he traced the history of ALS from 1824, the date of the first described case of the disease, to 1939, when Gehrig brought the disease sharply into the public domain, to 2014 and the ice bucket challenge that was launched by Pete Frates, the former Boston College baseball player who was diagnosed with ALS in 2012.

He grew excited as he described laboratory work with mice and results that showed longer survival rates and improved motor function.

“The most exciting parts are the next steps,’’ the soon-to-be PhD told his audience, all gathered to watch him defend his dissertation.

Sitting in that audience was Rich Kennedy, Zack’s uncle, who has been diagnosed with ALS and is receiving treatment. And he was smiling.

“Three years ago, I was sure I would be in a wheelchair now,’’ he said. “Three years ago, I didn’t think I’d be driving. I didn’t think I’d be speaking. Now, I don’t speak as well, I don’t walk as well. But I’m still in the game.’’

And so is his nephew, that little kid with his shirttail hanging out, who is now working to help cure a disease that already has cut far too close to home.

Zack Kennedy once studied mushrooms, working on plans to grow more food on fewer acres of land, fashioning remedies to combat hunger.

Then he walked into Dr. Brown’s lab. And his world changed.

“I immediately got the sense that this is what I wanted to do and this is what I needed to do,’’ he said.

For inspiration, Zack needs to look no further than the family that he loves.

“It definitely motivates me in what I do,’’ he said. “It is both a tremendous pressure and a real privilege to be able to work on this.’’

As he spoke, his 16-month-old daughter, Amelia, snuggled in her mother’s arms.

Then Zack Kennedy raised a plastic cup of champagne and toasted to “much more research to come.’’

At his side, Bob Brown offered this simple addition: “To a cure!’’

There were broad smiles and hugs of congratulations.

Jake Kennedy, Zack’s dad, read a funny poem that traced his son’s improbable journey to the cutting edge of science, remembering the boy who couldn’t keep track of his math books.

“Little did I ever expect that I’d be sitting here on this day and he’d be blowing away the crowd with breaking new research that’s going to do so much to defeat ALS,’’ Jake Kennedy told me.

Zack’s academic propulsion was as close as his family.

“Yeah,’’ Jake said. “That’s why he did it. He was very fortunate to be connected with Dr. Brown, who defies belief with what he does with ALS research. You know you can pass the gene on down to your kids, your grandchildren. It just goes on and on. And if someone can silence the gene, then not only are they OK, but every generation to follow them would be OK.

“That’s an amazing thing. It’s such a vicious, vicious disease.’’

And now, as he adds the title “doctor’’ to his resume, Zack Kennedy continues the urgent work to wipe out a cruel disease, a scourge that he wants to consign to medical textbooks.

And to history.