HANOVER, Mass. — “I cry every day,” Kevin Gosnell said. He sat nearly motionless in his wheelchair, parked in the corner of his living room.
Tears and stillness have never been his style. He was the captain of his college football team. He built a $25 million asphalt company. And he’s raised three boys with his wife, Kathy, his college sweetheart.
But Gosnell was diagnosed last spring with amyotrophic lateral sclerosis, or ALS, a neurodegenerative disorder often known as Lou Gehrig’s disease. It’s progressing rapidly. “I won’t see the anniversary of my diagnosis,” he said.
So he’s put his remaining energy into forming a partnership to bring together the leading neurologists, researchers, and patient advocates in Massachusetts to collaborate across institutional lines. Called ALS One, the group plans to work toward a cure — and in the meantime, to better support patients and their families.
Gosnell has also launched a related group, ALS Knights, to raise money for research. In the last four months, 1,200 supporters have raised $650,000, Gosnell said.
“ALS One is the best use of the time I have left,” Gosnell said.
“Nobody should die like this,” he added. “And there is no good reason that, 75 years after Gehrig died, we still don’t have a cure for this thing.”
ALS has had high-profile backers before. The ice bucket challenge, which went viral with videos of celebrities dumping cold water on their heads, has raised more than $220 million for the ALS Association.
But more is needed, said Dr. Eric Sorenson, a neurologist at the Mayo Clinic, where Lou Gehrig received treatment in 1939. More than 12,000 people in the United States have ALS, according to the National Institutes of Health. There is no cure. There is no way to stop or even slow the progression.
“The problem is ALS affects far fewer people than say, Parkinson’s or Alzheimer’s,” Sorenson said. Those illnesses end up with a good deal of available funding for neurology research, he said.
Dr. Robert Brown Jr., chair of neurology at the University of Massachusetts medical school, has signed on as an ALS One partner. He hopes the group will reduce the amount of time researchers like him spend raising money.
“The good news is that the field of ALS research is attracting the best minds, which was not true 30 years ago,” he said. “And now we have a group of passionately committed people investing in it.”
At home, Gosnell speaks to his son, Joey, in a shorthand only they know. The teen responds by pushing aside the blanket over his father’s knees and manually extending his right leg, gently holding it for a time until the feeling comes back.
“Because I can’t move my leg, sometimes it falls asleep,” Gosnell explained.
The cruelty and rapid progression of his ALS is apparent. A video from last fall shows him gesticulating to the rhythm of his own words, passionately and urgently enunciated. Now, his arms rest motionless on his wheelchair, even when he’s saying something important.
“Every day is hard. It’s overwhelming,” Kathy said. “Every week, you think you got a routine down, then it changes.”
Gosnell’s few movements now are achingly purposeful — small adjustments to his chair via the tiny controls at his left hand, a slight turn of his head to face his wife and sons.
He wears a microphone now. “My diaphragm is going,” he explained. He can’t take in enough air to project his voice, so the amplifier helps him to be heard.
And he has been heard. A lot. He has been speaking to groups around Massachusetts. Last fall, he gave a TED talk.
At the Gosnell house, the looming reality of Kevin’s death tempers any excitement over the launch of ALS One.
Scott, the oldest son, is away at college. Fraternal twins Joey and Jake, high school juniors with their mom’s large eyes and their dad’s jawline, sit on the couch with their mother. They say facing their father’s death gives them perspective.
“[ALS] is so spontaneous,” Jake said. “Everything you dreamed of with your dad isn’t just there. And you know, it makes everything seem so small. People worried about classes or a test just seems like nothing.”
“We value relationships a lot more now,” said Joey, “and pay a lot less attention to material things. It’s important that we learn these things.”
Dad looked at his wife and children, his eyes getting a bit wet.
“I’m so blessed,” he said.