April 21, 2022
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.
“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.”
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