TOGETHER IN GRATITUDE: One Couple’s Research Journey"
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For Ephraim Doumato, the warning signs were impossible to ignore. Not because they were dramatic, but because they were familiar.
"My father had serious memory problems," says the 73-year-old Lincoln, RI resident. "It was sad to see such a big personality become disabled." Though his father remained physically fine, his memory deteriorated in ways that were both heartbreaking and frightening.
Ephraim recalls one incident that sticks in his memory: his father taking two hours to return from what should have been a 10-minute trip to the bank, getting lost in his own neighborhood. Years later, when Ephraim began noticing similar patterns in himself, he knew he couldn't look away.
"I started noticing myself doing some of the same things," Ephraim recalls. His father’s struggle with memory loss, along with similar experiences among his father’s siblings, helped create a family history that made Ephraim acutely aware when his own memory began showing signs of trouble.
For 48 years, Ephraim and his wife Louise have built a life together. They met at Bryant College, where Louise worked, and Ephraim came to pursue a graduate degree. After dating for just a few months, the couple became engaged, married a year later, and went on to establish Ephraim Doumato Jewelers, a business that's been in operation for 45 years in Greenville’s Apple Valley Mall. They've raised two children, Matthew and Amanda, and now delight in their grandchildren: 16-year-old Gianni, who's eager to drive, and 13-year-old Scarlett, a softball player.
When Ephraim’s memory issues began to surface, Louise was there, as she'd always been. But this time, they were facing something new.
Through his primary care physician and consultations with psychologists and neurologists, Ephraim was referred to Butler Hospital's Memory and Aging Program (MAP). He was invited to participate in the TRAILBLAZER-REAL US Study, a groundbreaking real-world research study examining how a new medication works for people with early symptoms of Alzheimer's disease in everyday life, not just in strictly controlled clinical trial conditions.
"I came along at just the right time, and I'm so grateful that I did," Ephraim said.
The study involves monthly IV infusions at Butler Hospital over 18 months. Ephraim has now completed about half of his treatment schedule. The approximately 90-minute visits have become part of his routine.
Ephraim emphasizes his gratitude for the study and MAP staff. "It's easy and fits into my life," he says. "The facility is beautiful and comfortable. Everyone is so professional and pleasant. It really makes a difference.”
Perhaps the most remarkable aspect of Ephraim's participation in the study is what Louise has observed: significant improvement.
"To me, he seems better than he was, not as forgetful," she says. "Overall, he seems to have improved dramatically." But the changes go beyond memory. "Socially, he is more talkative now. Before the infusions, he was not as talkative in a group and didn't participate as much. He listened quietly. People were asking me if he was okay. But now, he has conversations, starts them, and laughs a lot more than he did. I've seen an improvement, and I think the children have too."
For Ephraim, the benefits are equally tangible. "I've stabilized," he says. "I'm not getting worse, and I'm not having experiences like my father did. I feel like my memory is improving."
Ephraim continues to drive, shop, cook, and help at the jewelry store a couple of days a week, maintaining his independence. “Sometimes I forget that he has this issue. He seems pretty normal,” Louise says.
With the winter months approaching, the couple’s dedication to the study will face its biggest challenge. Like many New Englanders, Ephraim and Louise spend January through early April at their winter home in Florida, where they’ve built a community of extended family and friends over 16 years.
When they realized there are no study sites in Florida that could continue Ephraim's monthly infusions, a choice emerged: take a break from treatment or find another way.
"We feel it is important to continue the infusions versus taking time off," Louise explains. So, Ephraim will fly home to Rhode Island for each monthly infusion, then return to Florida. “It's worth it," Ephraim says simply.
Participating in the TRAILBLAZER-REAL US Study has shifted Ephraim's perspective. "It's made me more aware of the number of people that have dealt with or are dealing with it now," he reflects. “It’s allowed me to be more comfortable with what’s going on. I am now keenly aware of the need for more research, and what will happen to people who will go through this through no choice of their own."
For Louise, the experience has reinforced the critical importance of early action. "The earlier you acknowledge that you're having issues, talk to your doctor, and have testing, the sooner you can start the process."
For Ephraim, participating in the study carries a dual purpose: helping himself while contributing to future treatments for others. “It’s beneficial to everyone,” he says. “Whoever can be involved in a program like this is doing a service to others. I am grateful to be doing something that helps so many people.”
Louise’s hope is straightforward: “I hope they find a cure, so that people don’t have to go through what we’ve been through.” While both recognize that such breakthroughs take time, they remain optimistic.
In the meantime, they're living life fully – looking forward to their upcoming trip to Florida and spending time with family. As Ephraim continues his monthly visits to Butler Hospital’s Memory and Aging Program, he’s not just fighting for his own cognitive health. He's contributing to a body of real-world evidence that could help countless others facing similar diagnoses. “The amount of time we spend on this is very little, but the impact has been significant.”