BRAINTREE (CBS) – A man who has run the Boston Marathon 31 times is sidelined now by ALS, a disease he’s helped raise millions of dollars to fight.
But for Rich Kennedy, his personal fight has just begun.
“For the past, now coming up on 22 years, we’ve been raising money,” he said.
That money goes to fight ALS, a disease that slowly robs its victims of their physical abilities and is always fatal.
“I’m proud to say that the total is just over $15-million that we’ve raised,” said Rich, who started The Angel Fund for ALS Research to accomplish that total.
The reason couldn’t be more personal.
“Unfortunately, my Dad was first,” he said.
Rich’s father died from ALS in the late ’80s. The doctors told the family it wasn’t genetic.
“We found out the hard way 5 years later when my brother Jimmy, the youngest of 9, started showing some symptoms and the evaluation on him revealed the fact that he had ALS,” Rich said.
Rich, who runs a physical therapy center in Braintree with one of his other brothers, took up the cause by holding fundraisers, running marathons and fielding a Boston Marathon team.
“It became quite a passion for me,” he said.
But two years ago, while preparing for his 32nd Boston Marathon, Rich was on a long training run.
“At about 9 miles into that run I just lost the ability, my left leg kind of gave out on me,” he recalled.
It was ALS.
“Yeah, I kind of knew,” he said.
He can no longer do the hands on work at his business, but still does some of the administration.
“ALS has slowly robbed me of strength. It started mostly with the left leg and has gone to my low back and across both hips,” he said.
But Rich is nowhere close to giving up.
“I’m a thick headed Irishman and I tend to look optimistically at everything, but the optimism is real,” he said.
Dr. Robert Brown, a world expert on ALS at Worcester’s UMass Medical School, is the reason for Rich’s hope.
“Rich is one of the most extraordinary people I think I’ve ever met,” said Brown.
All the money Rich and the Angel Fund raises goes to fund Dr. Brown’s work.
“The Angel Fund’s impact has been absolutely enormous,” Brown said.
The lab at UMass Medical is working on what’s called gene silencing, finding genes that cause ALS and turning them off.
Human trials could begin within a year.
Rich has become a motivator.
“His attitude is infectious. It really keeps us all on the ball and out of bed early and working hard,” Brown said.
“I get out of bed with a smile on my face because there is now optimism. It may prolong my life, it may save my life, but that’s something no one before me has had,” Rich said.
Ten to 15 percent of ALS cases are hereditary.
The Angel Fund’s Marathon team will take the start line in Hopkinton, and Rich will be at mile 24 waiting to cheer them on.