HANOVER — Kevin Gosnell is fighting back.
Diagnosed with amyotrophic lateral sclerosis (ALS) in May, the Hanover native and owner of T&K Asphalt Services in Whitman, is fairly typical of those with the neurodegenerative disease — he is a white male, between ages 40 and 70. What is not typical about him is his aggressive plan to raise the funds needed to at least develop a treatment, if not a cure, within four years.
Life-expectancy after diagnosis can be six months to five years, with 10 percent of patients living more than 10 years, according to the ALS Association.
“I’m going to try to make a difference,” he said at the Ice Bucket Challenge event held in support of him and ALS Knights on Wednesday, Aug. 26 as nearly 450 people donated for the opportunity to douse themselves in ice water, raising more than $18,000 for research. “I’ve been a coach and a mentor-type person all my life and I said to myself, ‘Maybe this — at the end of my life — will be the greatest lesson that I give my kids: strength, courage and grace, and to die with grace,’ and that’s not an easy thing.”
After researching the fund raising groups out there he developed his own mission: to fund development of treatment while researchers seek a cure. As the three top ALS specialists are working in Boston, Gosnell has met with them toward the goal of forming a partnership to develop a treatment protocol. It could cost as much as $200 million. The alternative is the current absence of treatment options other than assistive devices and therapies, he said.
“There’s nothing that they could do to help you … and you can see it in these [doctors’] eyes that they have no way of helping you,” Gosnell told challenge participants.
To raise the money, Gosnell has founded the ALS Knights. The foundation is comprised of people dedicated to five tasks: Be committed until a cure is discovered; be involved in at least one fundraiser a year; display the logo at every opportunity; provide a call to action; and be mindful and helpful to local ALS patients and their family.
“This event today, obviously, is to raise awareness,” he said earlier in the day. “But I think, more importantly, to get people to donate to a cause that’s under-funded. If the funding happens, I believe for sure that they’ll find a treatment.”
The Ice Bucket Challenge event brought out participants of all ages, members of the Hanover Fire Department, several Hanover High School sports teams and some student-athletes from Whitman-Hanson Regional High School as well as Gosnell’s friends and family members. T-shirt sales and a 50/50 raffle were also conducted for the cause.
“I was diagnosed at 46,” said the 47-yearold Gosnell as he leaned on crutches after making his way onto Hanover’s Sylvester Field via a scooter. “I started out back in the fall with a pain in my calf, and I thought nothing of it.”
As the pain progressed up his leg, eventually causing weakness, he was told early this spring it could potentially be ALS, but doctors weren’t certain.
“They rule everything else out,” he said. “There’s no real test for it, they just rule things out along the way.”
The ultimate diagnosis was devastating.
“It’s earth-shattering,” he told the crowd, his voice choked with emotion. “I’m a planner, I’m a dreamer, and everything you have in place is now changed — gone.”
Like baseball great Lou Gehrig, perhaps the most notable ALS patient whose name has become a shorthand reference for it, Gosnell has always been an active person. Gosnell’s diagnosis came at a time when he was working to develop executive teams for two businesses in the Carolinas and Texas, in which he had become a partner, while completing a deal to merge all the companies together.
“Any time you get a terminal illness with no cure, no treatment — nothing at all that they can do — and the horrific way that the disease ultimately takes your life, it’s terrible,” he said.
“He was officially diagnosed in May then he told his family and friends and told his company,” said Lynn Rinkus, a friend of Gosnell’s from Hanover. “His family day for his company turned into an Ice Bucket Challenge.”
That event on Aug. 2 featured 200 people taking the challenge and led to the bigger event last week. August has been selected as Ice Bucket Challenge Month until a cure is found, on the strength of last year’s inaugural challenge, begun by friends of Boston ALS patient Peter Frates, which raised $115 million for research.
Longtime friends of Gosnell, Brian Johnston, Matt Brooks and Chrissy Rinkus organized the Aug. 26 event.
“The more awareness we can spread, the better,” said another one of Gosnell’s friends, Karen Duffy of Hanson, as she helped fill buckets with water.
Duffy said the Framingham State University football team, where Gosnell went to college did an Ice Bucket Challenge recently in his honor as well.
“They challenged Fitchburg State,” she said.
Gosnell said he has a great support system within his company, too.
“I’ve got a great group of people, great executive team, great management team at the company so I’m fortunate and blessed,” he said. “A lot of people don’t have that support network in place.”
He gave the crowd a sobering idea of what the average ALS patient encounters.
Many ALS patients isolate themselves at home before the disease ever renders them house-bound, Gosnell said.
“You get locked into your own body,” he said. “You get held prisoner. Nobody should die that way.”
The typical ALS patient, according to Gosnell, loses their job and insurance, has to live on about $1,000 a month disability and tries to settle things for their family as they “navigate death.” The disease’s progression demands more and often more expensive devices to support life.
As a business owner, he believes he has found his way to fight back, using his professional skill set to help others.
“I’ve always lived my life to try to give and help people the best that I can, and it feels like that’s coming back,” Gosnell said on the emotional evening.