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Jan Cellucci continues to fight against ALS

Paul Cellucci, the former governor at the Nov. 18, 2002, unveiling of his portrait, painted by Ronald N. Sherr, which was added to the Great Hall at the State House.

MATTHEWJ. LEE/GLOBE STAFF

Paul Cellucci, the former governor at the Nov. 18, 2002, unveiling of his portrait, painted by Ronald N. Sherr, which was added to the Great Hall at the State House.

HUDSON — Jan Cellucci liked to keep a distance from her husband’s political campaigns.

“I felt that having my own career was my biggest contribution to Paul’s career,” she said.

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But when the former governor and ambassador to Canada died last year at 65 from amyotrophic lateral sclerosis, or ALS, he left behind unfinished business. His final campaign was launching the UMass ALS Champion Fund, a $10 million endowment fund for ALS research at the University of Massachusetts Medical School.

Paul Cellucci spent his last two years working the phones, ultimately bringing $2 million into the fund, now renamed the UMass ALS Cellucci Fund.

That left a sizable sum to raise. Jan Cellucci was determined to continue the work after his death. But she didn’t know how.

“It was a self-evident truth that we could not continue this the way he had been doing it,” she said. “We knew we couldn’t do any kind of regular event, from our framework of fund-raisers and picnics, that was going to be reminiscent of the way things used to be.” At a meeting last fall with medical school administrators, she put it to them bluntly: “I said we have two choices: We have an ending event, or we move forward.”

Now she is moving forward, in a different way — her own way.

‘Perhaps you have heard my diagnosis. . . ’

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She is directing the Governor Cellucci Tribute Road Race in the family’s hometown of Hudson. It’s a 5K run through town on Aug. 2 that she hopes will draw as many as 1,000 runners. The goal is to raise money for ALS research, and to honor her husband’s dedication to public service and to the state’s only public medical school. (As governor he signed legislation that helped transform the medical school into a prominent research institute.)

“My learning curve at the age of 63 goes way beyond the height of Everest,” said Cellucci, who has never run a 5K. She recruited the president of a local running club, Jim McKenna, to help plan the course, and described their initial meetings as “hilarious.” “It was like he’s speaking Sanskrit and I’m speaking Mandarin. I didn’t even know the nouns he was using.”

These days her conversation is sprinkled with references to race fields, electronic chip timing, and finish line chutes. She greets a reporter with a tidy folder of race-related documents: elapsed race time models, a traffic impact map, a schematic diagram of the heavy gold medal that will be awarded to every participant. Engraved on the side are the words “Governor, Ambassador, Proud Citizen of Hudson.”

“To me, it symbolizes the dignity of public office and the seriousness of raising money for [ALS] research,” she said. “ALS is on nobody’s radar. We’re down in the weeds.”

ALS, also called “Lou Gehrig’s Disease,” is classified as an orphan disease, although it’s more common than generally thought. Some 5,000 new cases are diagnosed each year in the United States, according to the National Institutes of Health, and it’s estimated that more than one out of 1,000 people now alive in the United States — at least 350,000 people — will die of ALS.

It is a progressive neurological disease that attacks the nerve cells controlling voluntary muscles, such as those in the arms, legs, and face, which become weaker as the disease progresses. It has no cure and no known cause, except in the 8 percent to 10 percent of familial cases which are caused by specific gene defects.

ALS strikes randomly and its trajectory is hard to predict: Some patients, though not all, lose the ability to speak, and there is wide variability in the ability to move, swallow, and breathe.

“Regrettably, the overall clinical trajectory and final clinical aspects converge on the too-familiar endpoint of widespread paralysis,” said Dr. Robert H. Brown Jr., who is chair of the neurology department at UMass Medical School, and was Cellucci’s physician.

The ALS fund supports research by UMass scientists headed by Brown, considered a pioneer in neurodegenerative disease, especially ALS. In 1993, his research team discovered the first gene linked to familial ALS; his latest priority is developing a new therapy that will turn off ALS genes whose products can cause ALS. They are also searching for new ALS genes and treatments, and believe insights into ALS treatments may be relevant to other neurogenerative diseases, such as dementia or Parkinson’s disease.

.   .   .

An ALS diagnosis is “overwhelming and devastating,” said Cellucci, who managed all the responsibilities of home, meals, transportation, and her husband’s daily care during his illness, which he battled for five years.

“To live with ALS requires a strength of character that is beyond comprehension — for the patient and for his family,” she said. “The disease slowly robs you of all normality.”

The idea for a fund-raising road race came from Megan and Kate Scott, the twin daughters of Paul Cellucci’s goddaughter, Cathy Cellucci Scott. Both girls are runners.

“It was perfect,” said Cellucci, especially since Paul was a daily runner himself. Her daughters, Kate Cellucci, 37, and Anne Cellucci Adams, 35, have been central to the planning, she said. “They have a measure of their father’s character in a way that’s so unique.”

Jan Cellucci is seated at her dining room table in the airy, modern, multi-story townhouse where they moved after his term as ambassador ended in 2005. Be it luck, or kismet, they had thought of installing an elevator in the house for their elderly parents; they never imagined it would be used by Paul.

His presence is very much in evidence in the house, through photographs and his political mementos and books, including his boyhood collection of Hardy Boy mysteries. It was here, in his home office, that he did much of his work in support of the ALS fund, now up to $4 million. (This includes a $1 million pledge announced Tuesday by a California couple, Diane M. Riccio, a UMass Medical School alumna, and Dan Riccio.)

He proposed the idea for the fund soon after his diagnosis, during his second medical appointment. “The reality was overwhelming,” Jan said. “But before Dr. Brown got out his notepad and I got out my list of questions, Paul said, ‘I’ve been thinking that as a former governor, I could do something to help.’ I don’t know who said $10 million, but Paul was very clear in that he wanted it to be an ambitious goal.’”

The medical school’s chancellor, Dr. Michael Collins, had reservations about the idea.

“I told him, ‘Are you sure? This disease is going to take every ounce of energy you have,’ ” Collins recalled. “He looked at me and said, ‘I just want to know: Are you with me, or aren’t you?’ ”

Cellucci continued his work for the fund almost until he died. The disease had robbed him of his strength and mobility, but not his ability to speak. Jan still recalls his fund-raising pitch: “Perhaps you have heard my diagnosis. . .”

“It was very hard for me to listen to the phone calls,” she said. “He had a famous — to me — phrase that he would use: ‘I’m not focusing on what I can’t do, I’m focusing on what I can do.’ ”

Still, it wasn’t easy for him, especially the events and interviews. “He’d have one outing and it would set him back a day or two, or three.”

Nor did everyone warm to Cellucci’s cause.

“I think people thought Paul would make 30 phone calls and there we would be,” she said. “But in this case, the donor actually has no expectation of anything in return. You’re not going to a gala inaugural. You can’t say, ‘I can call the governor.’ What you’re offered in return is the understanding that you’re supporting the state’s only medical school and an extraordinary research team. For people who felt devastated by Paul’s diagnosis, it resonated deeply.”

But not, apparently, for many others. “He would tell me, ‘I called so-and-so and they’re no good for nothing,” Collins recalled. “Or, ‘Look what they got, and look what they gave!’”

.   .   .

Jan Cellucci is a petite woman with short, pixie-ish hair who projects warmth, competence, and energy. She is also very funny, with a sharp, ironic eye.

“She’s good at seeing the humor in situations that probably a lot of people wouldn’t see,’ said her longtime friend Donna Ferullo, a lawyer and librarian on the faculty of Purdue University. The two worked together when Cellucci was a librarian at Boston College, where she developed the BC Libraries’ Preservation Department into a robust conservation department.

Cellucci seems to find a lot of things hilarious. Her daughters’ antics in school when they were young were “hilarious.” Organizing a road race in a small town is “hilarious.” She was so unqualified to organize this road race, it’s “hilarious.”

“She really did not have much knowledge of what it takes to put a road race together,” acknowledged race committee member Jim McKenna. “[But] she is a person of great determination and dedication. She is also very well-organized and methodical.”

“You’d have to read an e-mail from her to understand,” said Chris Yates, a Hudson lawyer who is on the race planning team. “She’s a librarian. She writes extremely well. I always proofread my e-mails like three times before I sent something back.”

The race has been a good distraction for Cellucci, helping her grind through this first, draining year after her husband’s death. Her days are packed with planning meetings, phone calls, logistical decisions, and helping out with her four grandchildren ages 7, 5½, 5, and 1.

She is still tending to her own recovery from the physical and mental anguish of taking care of the man who was her high-school sweetheart, the man who called her “the core of my life” in his memoir, “Unquiet Diplomacy.”

“Our family and close friends who were with us in our home as the disease progressed saw us navigate his care together,” she wrote in an e-mail, reflecting on the experience of living with ALS.

“They saw an ever-patient and ever-more dependent Paul, an exhausted Jan, but also a couple more devoted to one another as each day passed. We savored our time more, laughed more, reminisced more, and applauded our great fortune in having beautiful and accomplished daughters, gorgeous, adorable and compassionate grandchildren, and genuine and devoted friends.”

His interests broadened as his body failed him. He taught himself to use voice recognition software and continued his work. When he could no longer read his customary five newspapers a day, he subscribed to them online, navigating them by voice.

Looking back on some of the sweet times, many involved their grandchildren who saw him growing weaker, she said, but had no sense of the seriousness of his illness. They adapted their games to his growing disability.

“Once he began using a wheelchair, Grampie was promoted to the title of ‘Dr. Zoom!’ ” she said. “He was Mission Control, assigning his young superheroes to various tasks to save the world. . . . They loved his total delight in joining their world — their books, their kids’ TV shows, and their endless make-believe games.”

He lived long enough to kiss their youngest grandchild, Lucia Rose, born three weeks before he died.

Since his death, she has gone through some “very deep wells of grief,” she said. There have also been delightful times with family and friends, who have been very attentive to her. And organizing the race has been an education. She can hear Paul’s voice in her head, cautioning her to watch the budget.

“I no longer have Paul right with me to ponder challenges and options or to laugh with me at life’s many ironies,” she wrote. “However, he is ever my guide, my inspiration and my best friend.”

For more information about the Governor Cellucci Tribute Road Race in Hudson Aug. 2, visit www.racemenu.com/
governorcellucci-5K.

Linda Matchan can be reached at linda.matchan@globe.com.
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