Champion Among Us: Former Gov. Paul Cellucci goes to bat for ALS Research
By Meaghan Casey
It’s a campaign he never expected to launch. Yet former Massachusetts Governor Paul Cellucci is stepping back in the public spotlight to spearhead the UMass ALS Champion Fund – a fundraising initiative that aims to raise millions of dollars in support of the ALS research breakthroughs taking place at the University of Massachusetts Medical School (UMMS).
He is assuming the role not as a politician, but as a patient.
Cellucci, who has enjoyed a quiet, private life with his family since leaving public office after 35 years, announced in January that he has been diagnosed with amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s Disease, a degenerative disorder that causes progressive muscle weakness and the loss of voluntary muscle movement. It often begins with muscle twitching and weakness in an arm or leg, or with slurring of speech. Eventually, ALS affects a person’s ability to control the muscles needed to move, speak, eat and breathe. There is no current treatment that does more than slightly slow the progression.
Cellucci is under the care of Dr. Robert H. Brown Jr., chair of the UMMS Department of Neurology and one of the world’s leading and most promising ALS researchers.
“He’s an amazing person, a wonderful, compassionate physician and a top-notch researcher, and I’m very fortunate he’s my doctor,” said Cellucci.
Brown is widely recognized as a pioneer in neurodegenerative disease research and has been part of nearly every ALS breakthrough to date, including the identification of mutations in a gene that is responsible for 20 to 25 percent of the rarer, familial form of the disease.
“There has never been a better time to be hopeful,” said Brown. “There’s a plurality of possibilities that just didn’t exist six or seven years ago – other models of treatment besides drugs, such as gene therapy, gene silencing and stem cell therapies. There’s an incredible urgency to try to move forward to do everything we can do and to employ and deploy every resource to find a solution and put an end to this disease.”
Inspired by the realistic hope he was given by Brown, Cellucci made a commitment to spread that hope to others and help fuel the progress that was being made in the laboratory.
“It was clear after the first couple of appointments that Dr. Brown was probably the best person in the world to be treating ALS,” said Cellucci. “He’s someone who will leave no stone unturned in trying to help his patients. I was very impressed by that and I told him early on I’d like to help raise money for his research to continue. I see it as a continuation of my career in public service. I’m taking a difficult diagnosis and hopefully doing some good with it.”
A Hudson native, Cellucci was elected as Governor William Weld’s Lieutenant Governor in 1990 and was sworn in to complete the remainder of Weld’s term of office in 1997. He was elected Governor in his own right in 1998. In 2001, President George W. Bush named him U.S. Ambassador to Canada, and he served in that capacity for four years. When he left his post in Ottawa, he returned to work in the private sector, focusing on strengthening the economies of the U.S. and Canada and practicing law with the Boston law firm McCarter & English.
In May, Cellucci stepped up to launch the Champion Fund during a special event at Fenway Park. News of his diagnosis sparked an outpouring of support from friends and colleagues. Governor Deval Patrick declared the day “Paul Cellucci/ALS Champion Day” throughout the Commonwealth and Mayor Thomas Menino declared the day “Champion Day” in the City of Boston. Governor Patrick and all of the former Governors of Massachusetts agreed to serve as honorary chairs of the fundraising effort.
The goal of the initiative is to raise $10 million, which will go directly to Brown and his team at UMMS in their pursuit of ALS research leads and breakthroughs. Rather than waiting months or years to attract research dollars from traditional sources, the team will already have the funds in place to pursue some of the most high-risk, but potentially high-yielding ideas. It will also allow them to seize the moment and move forward immediately when promising discoveries are made. And for patients like Cellucci, timing is everything.
“I think they’re close to unlocking some of the mysteries around ALS, as well as multiple sclerosis, Alzheimer's and even aging itself,” said Cellucci. “My hope is that we can get breakthroughs that will slow or stop ALS progression, and ultimately lead to a cure – the sooner, the better.”
To become a champion in the fight against ALS, or for more information on the UMass ALS Champion Fund, visit www.UMassALS.com or join the fight on Facebook (Facebook.com/UMassALS) or Twitter (@UMassALS).