WORCESTER, Mass. (AP) - The family of a prominent Boston-area physical therapist and co-founder of Christmas in the City, a volunteer-run charity to help homeless children, has launched a new fund at the University of Massachusetts Medical School to support amyotrophic lateral sclerosis, or ALS, research under the direction of world-renowned ALS researcher Dr. Robert H. Brown Jr.
Jake and Sparky Kennedy announced this week the Jake Kennedy ALS Fund at UMass Medical School. The focus for raising $1 million, to help find a treatment and cure for ALS, touches the family personally. And the clock is ticking.
ALS is a progressive and ultimately fatal neurological disease that attacks the motor neurons in the brain, brain stem and spinal cord. Most people with ALS die from respiratory failure, usually within three to five years from when the symptoms first appear, according to the National Institute of Neurological Disorders and Stroke. About 10% of people with ALS survive for 10 years or more.
Jake Kennedy, 64, co-founder of Kennedy Brothers Physical Therapy, was recently diagnosed with ALS, a disease that already has stormed through his family.
His father, Chris Kennedy, former dean of students at Northeastern University, died from ALS in 1989, a year after he retired and the disease was diagnosed.
Jake’s youngest brother, Jimmy, died from ALS in 1997, at age 31.
In 2016, his brother and physical therapy business co-founder, Richard “Ratt” Kennedy, was diagnosed with the disease while training for his 32nd Boston Marathon.
One of Jake and Sparky’s four children, Zachary Kennedy, is working on the front lines toward a cure.
Zack Kennedy, 31, of Worcester, received his Ph.D. in biomedical sciences in August from UMass Medical School, where he was mentored by Brown. Zack works now in the lab overseen by Anastasia Khvorova and collaborates with Brown and others racing to develop gene therapy to halt ALS.
Jake has a form of ALS known as Bulbar onset, which affects his voice and swallowing first. He and Sparky, who live in Salem, New Hampshire, spoke to the Telegram & Gazette in a phone interview Thursday.
“This is a very optimistic time in the research world,” Jake said. “Dr. Brown is very, very optimistic about finding a cure for ALS.”
The couple’s children wanted to start the ALS fund at UMass to carry on their father’s legacy, said Sparky.
“The ALS gene is in the family and we wanted it to go to Dr. Brown,” she said.
Jake’s wide personal and professional network would be a source of support for growing the research fund, which she hoped would push beyond the $1 million target.
“Jake is really loved in the city of Boston,” she said. “Everybody’s come out this year to help us, knowing the family struggles with this gene.”
In Worcester, researchers have reason to be optimistic. Laboratory studies on animals have shown some positive findings. Several drugs are in the pipeline.
“It’s very easy to be passionate about the research,” Zack said Thursday, while working in the lab at UMass. “I hope to be part of the drug that will end a lot of family suffering.”
He said that with the advent of gene therapy, basic research is accelerating and more therapies are coming online.
There are 30 to 40 gene mutations linked to ALS.
About 10% of ALS cases are inherited, Zack said. Advances made in genetic research could also help address sporadic, or not-inherited ALS and other related neurological diseases, including some forms of dementia.
Zack was working on defects in one gene in particular, C9ORF72.
“We’re currently working to knock down that gene and silence it, reduce its expression,” he said.
If researchers can alter the gene and deliver it into the spinal cord or brain, it could reprogram the processes leading to cell death. Delivering the genetic therapy safely and effectively to the right place also brings another set of challenges.
“All these things are big problems we’re tackling here,” Zack said.
He believed that a drug could be developed within five years that could significantly slow down, if not stop, the progression of ALS.
“I’m honored to be on the team that’s on the vanguard” of developing these drugs, he said.
Knowing his family’s strong history of ALS, Zack said the weight of trying to find a cure was heavy, but one he gladly takes on.
He has been tested for the genetic mutation linked to ALS and learned he does not have it. But he worries about those who might.
Still, he said, it was also “wonderful to be in a position where I can help. I do feel very lucky to be in this position.”
The can-do spirit to fight ALS is another outgrowth of the generosity shown by the Kennedys when they founded Christmas in the City for homeless children in Boston 30 years ago.
Zack recalled helping to prepare gifts and activities for what has grown to 6,000 children at a family fun extravaganza hosted by volunteers at the Seaport convention center.
His parents started the program with a small group of volunteers for 165 homeless kids, he said, when he and his siblings were young, and they would get so many presents from the large extended Kennedy family.
“My parents wanted to make sure we knew what it was really about,” Zack said.
Jake’s brother and business partner, Richard, serves as president of the Angel Fund for ALS Research, which is also dedicated to supporting ALS research at UMass Medical School.
Together with a $1 million grant from the ALS Association, funded by proceeds from the Ice Bucket Challenge, UMass Medical School has received more than $2.1 million in private contributions toward ALS research over the last few years, on top of government-funded grants, according to a medical school spokeswoman.
Jake is planning to run the Boston Marathon, his 38th, in April. He has met the qualifying time standard for entry but he said he would also be raising money for the ALS fund.
“My speech is going downhill, but physically I’m fine,” he said.
He’s excited and upbeat about the future for biomedical research to find a cure for ALS. And despite knowing the devastating path that confronts those with the disease, he doesn’t feel sorry for himself.
“I’m the luckiest man who ever lived,” Jake said.
He counted his blessings of his wife, his children, his family, his job and Christmas in the City.
He said, “That will never change.”
Online: https://bit.ly/2QfeGfS
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