She was diagnosed with Alzheimer's at 53. But this Unity woman is not giving up.

Jun. 20—The neurologist's diagnosis sent Sara Belt's family members into shock.

Alzheimer's disease? At just 53 years old?

"I went numb," her husband, Don Belt, said of that summer day three years ago at the Westmoreland County specialist's office.

The 74-year-old venture capitalist and former corporate marketing executive recalls feeling helpless and dazed as he squeezed the hand of his wife, a Carnegie Mellon alumna who'd always challenged him intellectually and who taught math and Spanish to young children for nearly three decades.

Her children, in their early 20s with jobs in Downtown Pittsburgh and the North Hills, were devastated to learn that she had early onset of a progressive neurodegenerative disorder with no known cure. The grim prognosis: losing cognition in as soon as three to five years.

But Sara's initial reaction wasn't fear, anger or despair.

Instead, when Excela Health's Dr. Arvind Vasudevan told her she had a memory-destroying disorder eating away at her brain, Sara felt relief.

After grappling with a mounting list of frustrating issues and behavior changes that she couldn't understand — from forgetting to lock doors and losing her sense of space when setting the dinner table, to having trouble saying the right words and completing sentences — she finally had an explanation.

"I was happy because then I knew what was going on," Sara said while recalling her June 2018 diagnosis on a recent afternoon while sitting beside her husband on a sofa in their Unity home. "And I decided to fight it."

"She took it really, really well," recalled Vasudevan, who's affiliated with Westmoreland Hospital in Greensburg. "She just said, 'Well, what do I need to do next?' "

Her fight comes at a pivotal time for Alzheimer's — a disease affecting more than 6 million Americans. The disease is back in the spotlight following the Food and Drug Administration's controversial approval of a new drug to treat it — the first in almost two decades. The costly drug — with a reported price tag of $56,000 a year per patient — has precipitated passionate discussions about whether patients will ever get a crack at a cure — and whether Biogen's drug will live up to the pharmaceutical giant's claims.

Attacking Alzheimer's disease

Now, at 56, Sara's condition has advanced from mild to moderate and upended her life and daily routine. But she's managed to sustain much of her mental sharpness, problem-solving skills and long-term memory, surpassing the expectations of her initial prognosis.

What's more, the Belts have become national leaders in the Alzheimer's disease advocacy community, proving to be a quiet power couple pushing for advancements while inspiring physicians and researchers as well as patients and caregivers.

They serve as ambassadors for the Chicago-based Alzheimer's Association. The pair has regular Zoom video chats with federal lawmakers to discuss needs and legislation that would direct more federal resources and funding toward finding a cure — including Sens. Pat Toomey and Bob Casey Jr., and Reps. Guy Reschenthaler and Mike Kelly. They put together a resource kit for patients that Vasudevan loved so much he asked if he could share copies with his other Alzheimer's disease patients. They'll speak at events and take calls and emails from anyone with questions.

"They just care," Vasudevan said of the Belts. "They care about the community, about all the people who are living with this disease, and it really shows."

Buoyed by her husband's support, independent research, devoted caretaking and loving partnership, Sara Belt is participating in her fourth clinical trial of an experimental drug treatment.

"They are a very courageous couple," said Elisa Poggi, director of Insight Clinical Trials, an independent research institute based outside Cleveland in Beachwood, Ohio. Insight is running the latest clinical trial that Sara believes already may be having a positive impact. "How they're attacking this illness is head-on. They are definitely fighters."

Major milestone or false hope?

Getting into the most promising clinical trials was one of the first steps the Belts took to fight back, hoping to be on the forefront of major treatment breakthroughs expected to happen in the near future after decades of failed approaches. Until last week, no new drugs had been approved even to treat the symptoms of the disease since 2003.

Stunning proponents of the new drug as well as skeptics, the FDA last week approved Biogen's aducanumab, making it the first Alzheimer's disease drug approved in decades and the only one approved that is intended to help prevent or slow the disease's progression. Some doctors and advocates have expressed excitement in the unexpected approval, while others say they're confused and concerned about the decision.

Aducanumab — which still will be monitored via a Phase 4 clinical trial as it heads toward the market as Aduhelm — aims to prevent or slow the progression of Alzheimer's disease and the cognitive decline it causes by removing harmful clumps of a protein in the brain called beta-amyloid.

But, like those in the divided medical community doubtful that the drug will actually work — including Vasudevan — the Belts don't think that Biogen's latest drug is a superstar-solution, and could pose risks without providing any benefits. They, like many experts including Vasudevan, have concerns over too many patients flocking to a pricey drug that has yet to show strong signs of efficacy.

The move was controversial enough to spur three FDA advisers to resign from their posts. The FDA's peripheral and central nervous systems drug advisory committee had voted against Aduhelm's approval, and many doctors have come out and said they would not prescribe it. It's also unclear whether the drug will secure sufficient funding from Medicare and other insurance plans, with the pre-insurance cost of treatment per patient estimated at $56,000 per year plus thousands more for related testing.

In a statement issued to the Trib, a spokesperson for the Centers for Medicare & Medicaid Services said the "milestone provides hope to families, caregivers and the older Americans living with Alzheimer's who rely on Medicare for health coverage" and that the federal agency will announce more information regarding Aduhelm soon.

The drug likely would be most beneficial for patients who are newly diagnosed or have only mild symptoms, not more moderate cases of the disease like Sara, her physician said.

"She's a little bit beyond just mild now at this point, so she may not have this option anyway," Vasudevan said.

The trial she began a few months ago, Athira's ATH-1017, involves daily injections and seeks to trigger the repair and regenerative pathway for brain cells. Up to 400 people are participating in the United States and Australia, including seven patients at Insight's Ohio institute.

"This study is really looking at repairing the neurons and the transmitters in the brain," said Insight's Poggi, "because that would then hopefully recover some of the cognitive deficits that they have lost."

Focusing on routines

Up to 6% of people with Alzheimer's disease — or about 350,000 — are younger than 65. Experts estimate that as many as half of people with the disease have yet to be diagnosed — in many cases, because people don't want to admit they have it, Poggi said.

The average life expectancy for an Alzheimer's patient is three to 11 years after getting diagnosed.

"We were in agreement that we would fight the disease with everything we could," Don Belt said.

Sara can no longer drive a car, cook meals or go on riskier adventures she used to enjoy, such as skiing. She grapples with a bit of shakiness of her hand — something her doctor said is not a direct effect of the disease, but a sign that her body has anxiety from undergoing something it can't quite understand.

Prior to her diagnosis, she'd been unable to reach because of memory loss and other issues. Her primary care physician initially suggested perhaps Sara was suffering from depression — an explanation that didn't sit well with Don nor Sara's sister, who knew that wasn't the problem.

"It took a while (to get diagnosed)," said Sara, recalling months of testing and uncertainty leading up to accepting that she had the disease. "I thought my brain was going."

She's still a voracious reader — everything from historical fiction and World War II nonfiction to the Bible and Spanish literature — and continues to participate in many of her favorite hobbies as well as volunteer work. She helps Don lead Bible studies at Charter Oak Church — where Sara first grabbed Don's attention while singing in the choir — and enjoys playing board games with her grandchildren. She cares for the therapy dog they've been training since it was a puppy, a 9-month-old border collie named Rayhab.

Sara credits her progress to a combination of possible benefits from experimental drug trials, but also a disciplined routine, including daily cardio and a Mediterranean diet with plenty of fish, nuts, fruits and vegetables, red meat no more than once a week and limited refined sugars and processed foods.

She starts nearly every day the same — by singing a song with her husband about what day it is and anything big on the agenda ("Today is Sunday, we like Sun-dayyy ... We're going to Cleveland today,") a playful tune inspired by songs she sang with students before the disease's effects forced her to retire from teaching. She drinks coffee and takes vitamin supplements, then gets in three miles on an elliptical machine. She eats a breakfast of yogurt, fruit and nuts, then spends time on the brain-training game Lumosity via her computer before heading to her reading table. Just about every night, the couple has dinner — typically, salmon with vegetables — with Sara's 84-year-old father, either at their home or his nearby home.

"We learned you just can't take a piece of medicine and be well," Don said. "You have to change your lifestyle. You have to exercise significantly. You have to be in social gatherings often to stimulate the brain. You have to read. You have to follow a regimen on food."

Sara wishes she'd made some lifestyle changes sooner. Research shows that it's especially important to stay active, eat healthy and stimulate the brain in the 40-55 age range to thwart problems later on.

"You want to challenge your brain," Poggi said. "Start doing algebra. Learn a new language. Whatever you can do to make your brain think will help. Exercise will help. Eating just a healthy diet, keeping the inflammation down. We're even looking at a medicine that's made of seaweed. There's so much promising and hopeful studies, people just have to go out and search for them and be active participants."

It certainly helps that Don and Sara Belt, who just celebrated their 10th anniversary, make such a good team. They laugh and smile, a lot. Don stays close to her side through most of the day — to help her communicate, such as finding the word that's on the tip of her tongue. He'd just about given up on finding a life partner after his divorce, and Sara, too, was hesitant to go out with Don following a rough first marriage. But once Don got the courage to ask Sara out, the pair spent hours talking at the local Coffee Bean, and soon after he won her family's approval.

The couple still goes for hikes and tend daily to many trees, flowers and fruit-bearing plants, including a large caged blueberry patch alongside their home's garage. Last year, they took a trip to Israel, and next year they hope to plan a tour around Europe.

They relish their road trips together on days she travels to the Ohio for clinical trial evaluations, often listening to news radio or audio books, and always stopping for dinner at Panera Bread on the drive home.

For Sara, participating in clinical trials not only serves the broader community, but gives her and her family a lot of hope.

Based on her observations and feelings, she perceives the current clinical trial's medication as already making daily life a little easier. She won't know until the fall whether she has been a part of the placebo-controlled group; if she was, she can begin taking the open label version of the Athira's neuron-repairing drug via the extension study set to start in September.

"She is not giving into depression, she is not becoming apathetic, she's taking these lifestyle changes very seriously," Vasudevan said. "If all my patients were like this, it probably would buy them several more years before this disease progresses."

Natasha Lindstrom is a Tribune-Review staff writer. You can contact Natasha at 412-380-8514, nlindstrom@triblive.com or via Twitter .