Larry Montani, of Lewiston, looks at a photo taken of he and his sister Mary Jo, who ended up in the Boston Home with severe multiple sclerosis 12 years before she died in April 2019. He brought University at Buffalo researchers to the specialized nursing home in his native Massachusetts several weeks later, which helped launch a clinical trial that could help others with the neurological disease.
Multiple sclerosis robbed Mary Jo Montani of many abilities late in life.
She could barely move. She needed a feeding tube. She couldn’t speak.
“She was still cognitively aware and alert,” said her brother, Larry. “She could see things and nod her head, but she effectively lost all her ability to vocalize or communicate in any way other than through her eyes.”
Still, MS failed to claim her spirit, and part of the credit for that goes to the staff and surroundings of the Boston Home, one of few centers solely devoted to treating the most stubborn cases of a neurological disease borne by nearly 3 million people worldwide.
Before she died in April 2019, Montani was among up to 10% of those with MS who don’t respond well to the growing number of therapies that push the disease into remission for extended periods, lessening symptoms and lengthening life.
Drugmakers focus on those therapies, said Dr. Robert Zivadinov, a University at Buffalo researcher. But he decided to take a different tack with some of his research after Larry Montani arranged for him to visit the Boston Home, where his sister thrived as much as possible during the last dozen years of her life.
Zivadinov and his colleagues have since spent time there gathering MRIs, blood samples and medical data of residents with severe MS, launching a clinical study to compare them with the same information from an equal number of more typical patients in Western New York.
The Comprehensive Assessment of Severely Affected MS (CASA-MS) study aims to predict disease severity risk and measure progression in hopes the work will lead to other innovative therapies, and perhaps a cure.
Researchers at the University at Buffalo this week released findings of a long-term study which used brain scans of those patients to yield clues about how secondary progressive MS appears to
“This is probably a decadelong project,” said Zivadinov, a neurologist focused on multiple sclerosis research at the UB Jacobs School of Medicine and Biomedical Sciences.
The study will cost about $1 million, he said, and involve three phases:
• Collecting radiological, blood, cognitive and frailty testing data, with a preliminary examination planned for this summer.
• Re-examining participants regularly for two more years to measure how much difference a welcoming social environment like the Boston Home can make in the most challenging cases.
• Performing more precise and sophisticated radiology scans on some participants to learn how brain and spinal activity differs over time between people with more typical MS and those with the most severe disease.
“There are no best practices," said Zivadinov, principal investigator. "There are no comprehensive studies. There isn’t even a consensus clinical definition of ‘severe MS.’ … We need to do so many steps to even create outcomes and understand where we need to attack.”
Larry Montani, of Lewiston, says his sister Mary Jo and brother Mike, who both died from severe cases of multiple sclerosis, would be thrilled that University at Buffalo researchers, Buffalonians with MS, and staff and residents at the Boston Home are working together to learn more about a neurological disease that nearly 3 million people have worldwide.
Multiple sclerosis forms when the immune system attacks sheaths that protect nerve fibers in the brain, spinal cord and optic nerves. Lesions result. Symptoms vary, and can include fatigue, numbness or tingling, walking or vision problems, pain and brain fog.
“MS has been referred to as the snowflake disease,” said Christine Reilly, CEO at the Boston Home. “You can have 1,000 people and everyone's story is different, everyone's progression is different.”
Zivadinov and his research team aren’t the only ones mystified by how some cases advance more rapidly to severe disease and death.
So is Larry Montani, one of 10 siblings who grew up in Milton, Mass., outside Boston. His brother Mike died at age 54 from an accelerated case in May 2009, followed by Mary Jo a decade later at 61. Another sister, Lorretta Porter, has fared better with a milder form of the disease.
All three were diagnosed in their late 20s or early 30s, which is typical. MS is twice as common in women than men.
“It’s frustrating to not know why, but also to be concerned that it could pass genetically throughout the family,” said Montani, an engineer who moved to Lewiston in 1984 to help his wife, Mary, and his in-laws run Niacet Corp., a Niagara Falls chemical company the family sold in 2017.
The couple, now retired, have five children and five grandchildren.
Staff and residents at the Boston Home share the concerns, and refuse to feel powerless in the face of challenging odds.
Neither did Mike or Mary Jo Montani, who both had more frequent flare-ups and needed wheelchairs by their early 40s, a requirement to live at the licensed nursing home in the Dorchester neighborhood of Boston.
Mike, a real estate investor and property manager, chose to spend his last years in a beach house in Hyannis, Mass.
Mary Jo, a single mother who worked in the Boston fashion field and got to see three grandchildren before she died, was in her late 40s when she arrived at the Boston Home.
Larry Montani got involved about a year later with the Western New York chapter of the National Multiple Sclerosis Society, and later with the Buffalo Neuroimaging Analysis Center (BNAC).
The center uses innovative and advanced techniques to better understand and treat neurological diseases. Launched in 2000, its researchers have participated in more than 80 clinical trials involving multiple sclerosis, stroke and Parkinson’s disease.
Montani chairs the advisory council, which helps the center choose research topics. In 2019, he invited Zivadinov and other researchers to visit the Boston Home, six weeks after his sister died.
“I just thought if nothing else, this would help incentivize, motivate or reinforce the importance of the work that the BNAC researchers do,” Montani said. “Within a short time of our arrival, the wheels were spinning, the synergy. Before we left, there was interest on both sides to pursue collaborative opportunities.”
Delaware North Chairman Jeremy Jacobs applauds in late 2017 during the grand opening of the new University at Buffalo Jacobs School of Medicine and Biomedical Sciences on the Buffalo Niagara Medical Campus. Jacobs donated $30 million toward furthering research at the medical school.
The home – known as the Boston Home for Incurables when it opened in 1881 – houses 96 residents. The average age is 60, Reilly said. The youngest is 32; the oldest are in their early 80s.
One in three residents have called the place home for more than a decade.
“Everybody tells me, I don’t know why you’re doing so well but keep doing what you’re doing,” Tony Ferro said. “If I can do it, anybody
It also serves hundreds of outpatients.
Most residents start their days in the cyber café. Rehab offerings include gardening and watercolor classes. Residents launched an online art gallery during the pandemic, during a time when challenges with reimbursements and staffing intensified, Reilly said.
Zivadinov said the new joint research may help the home successfully argue that health insurance should cover more related costs.
“When people come to us, we're not focused so much on the disability, although, of course, that's part of the admission criteria,” said Alex Burnham, a speech-language pathologist who directs rehabilitation services. “We're really focusing our attention on residual ability. What can the person still do? What do they want to continue doing even though they are requiring 24-hour care for their basic needs?”
The UB team has helped the home improve and standardize medical data for residents and outpatients, Burnham said, which will make it easier to follow and understand future treatments and outcomes.
BNAC staff – including study co-principal investigator Ralph H. B. Benedict, a professor of neurology at the Jacobs School, and Dr. Zachary Weinstock – have visited every six to eight weeks during the last several months.
“It takes about three hours for residents to do the interviews, but for many of them it's their life mission to talk about their own experiences," Burnham said. "The main thing that people say all the time is, ‘I know this probably won't help me, but if it helps even just one person who's just been diagnosed with MS, it'll make all the difference.’”
Dr. Lawrence Jacobs of Buffalo conducted research of an unorthodox multiple sclerosis therapy that led to to the breakthrough drug Avonex for patients.
Rita Andolina, 67, a retired social worker, feels the same. Her MS has been more typical and manageable – but hasn’t been easy.
Andolina, of West Seneca, graduated from UB School of Social Work in 1997 and was considering law school when she experienced brain fog and started to drag her right leg. Two weeks later, her right arm and hand became paralyzed.
“Research in general is the only hope for people with MS,” said Andolina, part of a long-term New York State research study since 1998.
Pilates, physical therapy and a nutritional study helped keep her in remission most of that time, she said, along with Avonex, an injectable interferon therapy developed through the research of Dr. Lawrence Jacobs, who helped treat Andolina for three years as chief of neurology in the UB medical school.
Fourteen years after Jacobs died in 2001, his brother, Jeremy, longtime chair of the UB Council and owner of the Boston Bruins, made a $30 million donation to help shape research at the medical school, which has since borne the family name.
MS forced Andolina to retire almost a dozen years ago. She since has moved into the secondary progressive form of relapsing-remitting disease, and often needs a cane to walk, but remains a “perfect example” of the control group in Buffalo that can help researchers better understand those in Boston with more aggressive and severe disease, Zivadinov said.
Those leading the study in both cities hope preliminary data will encourage the National MS Society and National Institutes of Health to fund later phases.
Larry Montani is pleased he helped kick-start the clinical trial.
He knows Mike, along with Mary Jo Montani – whose watercolor painting of the Boston Home helped create a logo for the clinical trial – would be, too.
“They never gave up hope,” he said, “that there'd be a better day for themselves or others.”
To learn more about the study and support it, visit bnac.net/casa-ms. Those interested in enrolling can email info@bnac.net.
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Larry Montani, of Lewiston, looks at a photo taken of he and his sister Mary Jo, who ended up in the Boston Home with severe multiple sclerosis 12 years before she died in April 2019. He brought University at Buffalo researchers to the specialized nursing home in his native Massachusetts several weeks later, which helped launch a clinical trial that could help others with the neurological disease.
Larry Montani, of Lewiston, says his sister Mary Jo and brother Mike, who both died from severe cases of multiple sclerosis, would be thrilled that University at Buffalo researchers, Buffalonians with MS, and staff and residents at the Boston Home are working together to learn more about a neurological disease that nearly 3 million people have worldwide.
Dr. Lawrence Jacobs of Buffalo conducted research of an unorthodox multiple sclerosis therapy that led to to the breakthrough drug Avonex for patients.
Delaware North Chairman Jeremy Jacobs applauds in late 2017 during the grand opening of the new University at Buffalo Jacobs School of Medicine and Biomedical Sciences on the Buffalo Niagara Medical Campus. Jacobs donated $30 million toward furthering research at the medical school.
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