Family on the front lines in battle against ALS

Chris Kennedy was the longtime dean of students at Northeastern University and when his last commencement coincided with Father’s Day, his family threw a party.

One of Kennedy’s nine kids, Richard, who everybody calls by his childhood nickname Ratt, was standing there at the party when his brother-in-law, a doctor, approached.

“I think your dad had a stroke,” he said. “I just shook his hand and his grip is weak.”

It was worse than they could have imagined. It was amyotrophic lateral sclerosis, Lou Gehrig’s Disease, a progressive and always fatal neurological disease where your mind remains robust as your body eventually loses functions. The worst.

Jimmy, the youngest of the Kennedy kids, was heading off to Georgetown Law School but he moved back to the family home in Quincy and took care of his dad. They called Jimmy “Squirrel” because, well, because every Kennedy kid had a nickname.

Richard "Ratt" Kennedy (left) and Dr. Robert H. Brown Jr., a leading ALS researcher.The Angel Fund/Boston Globe

Chris Kennedy died in 1989, about a year after he was diagnosed. Jimmy Kennedy went on to law school, and had just started with a big law firm when he suddenly began losing his balance.

It was ALS. He was 28. The doctors told him he wouldn’t make it to 30. He defied them and lasted until he was 31.

Having lost his father and his brother to the same cruel disease, Ratt Kennedy was determined to do something. Nineteen years ago, he started the Squirrel Run, to raise money for ALS research.

Ratt Kennedy wanted to do more and he learned that a great lady named Ginny DelVecchio had started a thing called The Angel Fund to support the research of Dr. Robert H. Brown Jr., one of the world’s leading ALS specialists.

In looking for a philanthropic model, Ratt Kennedy needn’t look far. His brother Jake and Jake’s wife, Sparky, had years earlier founded Christmas In The City, which delivers toys and a huge party for the region’s homeless children. In fact, Ratt Kennedy was himself enmeshed in Christmas In The City.

“The idea is to keep the administrative costs as close to zero as possible, so that everything goes toward the goal,” Ratt Kennedy said. “With The Angel Fund, we typically send about 97 percent of what is raised to Dr. Brown’s research.”

It is hard to think of anyone who has done more to raise money to promote awareness of ALS and research than Ratt Kennedy, now the president of The Angel Fund. He has raised millions of dollars. He treats ALS patients at the physical therapy practice he and Jake run. He has done much to bring us closer to a day when ALS could be cured. And that’s why this next part is so hard.

In March, Ratt Kennedy was training to run his 32nd Boston Marathon. He was eight miles into a 23-mile run when his left leg just quit. He was about to enter World’s End, the spectacular reservation on Hingham Harbor. Instead, he turned around and walked eight miles home to Cohasset. Every step of the way, he knew what was waiting at the end.

“The irony is, I walked this most beautiful route, up Jerusalem Road,” Ratt Kennedy said. “I knew in my heart what was going on with my body, but I was able to enjoy the beauty of that walk.”

He drove out to the UMass Memorial Medical Center in Worcester where Dr. Brown does his work and he took the blood test that confirmed what Ratt Kennedy knew as soon as his left leg went dead: He has ALS.

Ratt Kennedy and his wife, Wendy, hit the road, because he wanted to tell each of their four grown kids face to face. They drove down to Washington, D.C.., to tell two of them.

“I didn’t know how much my kids knew about ALS until I told them about my situation,” he said. “They knew more than I could imagine.”

While only about 10 percent of ALS cases are familial, once it strikes a family, the odds are scary. About 50 percent of children born to someone with ALS will be predisposed to the disease.

“That doesn’t mean they’ll get it,” Ratt Kennedy said, “but those are odds we all live with.”

His father was diagnosed at 65. His brother was 28. He is 56.

“What happened to me is not unfair,” Ratt Kennedy said. “What happened to Jimmy was unfair. He was 28 years old.”

Last week, Ratt Kennedy was his usual boyish and buoyant self as he presided over the 19th Squirrel Run in Quincy. Pageant Park was full of runners and walkers and people who go back to the old neighborhood.

Ratt Kennedy introduced Dr. Brown to the crowd.

“My hero,” Ratt Kennedy said. “How many doctors would volunteer to do work where all of their patients don’t survive.”

That said, Ratt Kennedy believes he will survive.

“If I was diagnosed two years ago, I wouldn’t be as hopeful,” he said.

“There’s been so much progress since then. When I talk to my kids, I’m 100 percent hopeful. When I talk to donors, I’m 100 percent hopeful. If you want the truth, when I talk to myself, I’m 50 percent hopeful.”

Fifty-fifty odds are pretty good, given the history of ALS.

For 20 years, Ratt Kennedy has been taking care of others. Now his friends want to help take care of him. Next Saturday, they’ll gather at Boston College High School, for a Rally For Ratt. People can donate at rallyforratt.com or on Facebook.

Ratt Kennedy is still trying to adjust to being Brown’s patient instead of his benefactor.

“Life throws a lot of things at you,” Ratt Kennedy said. “I’m not going anywhere without a fight.”