THIS STORY HAS BEEN FORMATTED FOR EASY PRINTING

Cellucci to take ALS fight public

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By Frank Phillips
Globe Staff / May 19, 2011

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Not until Paul Cellucci gets up to shake hands is it clear that something is wrong.

Sitting in a chair overlooking the University of Massachusetts Medical School complex, Cellucci is as sharp as when he governed the Commonwealth — full of tales about the notorious rascals of Beacon Hill and beaming about his family life.

But when he gets up for a handshake and a move to another chair, his step is a shuffle, his grasp awkward.

It’s been two years since the former governor and Canadian ambassador received what he calls a “devastating diagnosis’’ of Lou Gehrig’s disease, the degenerative and incurable neurological disorder that cripples the body but leaves the mind untouched. It is among the cruelest of terminal illnesses.

In his first interview since he publicly acknowledged his illness in January, the 63-year-old said last week that he is ready to reemerge publicly.

Convinced a treatment is in reach during his lifetime, Cellucci is fighting back, eager to use his status as one of Massachusetts’ elder statesmen to raise money for research to cure what is officially known as amyotrophic lateral sclerosis, or ALS.

“I want to take the diagnosis and try to do good,’’ said Cellucci, who continues to live an active life. “I believe they are getting very close to a significant breakthrough. That’s what gives me hope, and that it is going to help me in my lifetime.’’

Tonight, Cellucci is scheduled to ride a golf cart onto the field at Fenway Park just before the start of the Red Sox game. He will unveil a campaign to create a $10 million endowment to fund elite ALS research at UMass Medical School. That work will be headed by neurologist Dr. Robert H. Brown Jr., who has taken on the role of Cellucci’s personal physician.

The research will take place just a handful of miles from the former governor’s Hudson home.

For Cellucci, the first sign that something was not right came four years ago, when he began to notice that he was having trouble fastening the top button on his shirt. For two years, his physicians put him through a battery of tests, with no conclusions. Then he was hit with the news.

“It is a devastating diagnosis, absolutely,’’ Cellucci said.

One of the hardest parts was telling his children, Kate and Anne. “It wasn’t an easy thing to do,’’ he said. But “you realize very quickly that your life goes on. You keep working, you keep having fun.’’

During the hour-long interview, he showed much of the same feistiness he had during his long Beacon Hill career in which he rose from the lowly post of a back-bench Republican legislator to governor.

Some physical signs of the disease are now evident. The mobility in his arms and legs has diminished as the illness weakens his muscles. But his mind is as quick as it was when he arrived at the State House as a young GOP legislator in 1977.

His eyes sparkle when the conversation swerves to politics and to the wars he has waged and the characters he has met, including presidents and foreign leaders, through his roughly 30 years in public office.

Cellucci, who stepped down as governor in 2001 to serve fours years as US ambassador to Canada, was eager to tick off his gubernatorial record: an income tax cut, an extra runway at Logan International Airport, and successes preventing the scuttling of education standards.

But it was an accomplishment that did not get much attention that now seems the most poignant. In 1997, then-Governor Cellucci signed a bill allowing UMass Medical School to merge its clinical operations with a local Worcester-based health-care system. The deal helped create a $40 million research complex on the UMass campus. The building is now home to Brown’s ALS lab.

That moment 14 years ago was captured in a photo that Cellucci now keeps. In it, he is surrounded by Worcester officials. Only later would he recognize the significance.

Cellucci was reticent on his own experience with his illness, insisting he wanted to keep the focus on his campaign to provide funding.

Still, the medical reality is sobering. The average ALS survival rate is three to five years. The disorder affects the motor neurons in the central nervous system, destroying voluntary muscle movement and eventually leading to death from respiratory failure.

Cellucci said he is fortunate because he has what his doctors says is a “slow’’ case, giving him hope that he will benefit from what Brown and the UMass medical researchers will develop.

Brown, who in 1993 discovered gene mutations that cause an inherited form of ALS, left Harvard Medical School and Massachusetts General Hospital three years ago, lured to the UMass facility in Worcester by its chancellor, Michael F. Collins, who has been assembling a team of leading scientists.

The researchers are trying to unravel the biological mechanisms of genes and develop ways to regulate their activity, which could include shutting down ALS genes.

“With the disease, the prognosis is always dire,’’ said Brown, who sat with Cellucci during part of the interview. But its progress and trajectory vary.

“The governor seems to be on a milder course, a smoother trajectory than most people, so we think that bodes well,’’ Brown said.

The first priority of his research is to find ways to significantly slow the disease. The cure is further down the road, but not out of sight. Brown predicts that within five years there will be new therapies available. “To come up with a treatment in a half decade would be a fantastic accomplishment,’’ he said.

The new endowment will allow the UMass medical team to “jump-start projects’’ by giving it quick access to funding for experiments that are often long shots but have the potential to produce significant results.

“These private resources will allow us to do the sort of creative work . . . knowing some of it will fail but some will be very successful,’’ Brown said.

Cellucci, meanwhile, is focusing on his family. His daughter Kate is a school teacher who lives with her 2-year-old son down the road from the medical school. Anne is in Pittsburgh, with her two children and her husband, a professional hockey player.

The former governor remains special counsel at the Boston office of the law firm McCarter & English and is working on consulting projects with his old legislative colleagues, Andrew Card and Andrew Natsios.

He said the three feel that they have come full circle from the days of knocking their heads against the deeply entrenched Democratic leadership in the Massachusetts House. He described how they were once huddled on the House floor, outgunned and outmaneuvered, when a newly elected Democrat from Boston’s North End approached them with a smile.

“You guys aren’t going anywhere in politics because you’re Republicans,’’ Cellucci recalled him saying. The Democrat was Salvatore F. DiMasi, who went on to become speaker and is now on trial on federal corruption charges.

Nearly 20 years later, Cellucci was the US envoy to Ottawa; Card was White House chief of staff; and Natsios was the top international development officer at the State Department.

Cellucci smiled as he reflected on how far they have come.

Frank Phillips can be reached at phillips@globe.com.

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