One coin at a time
How the CART Fund is fueling Alzheimer’s research
Nancy Rogers seemed too young to have Alzheimer's disease. But in 1999, her husband, Norm, knew something was wrong. First, she misplaced a couple of pocketbooks. Then, she started getting lost on the 11-mile commute from her office to her home in Raleigh, North Carolina.
"I would get a call from a highway patrolman 60 miles away in Greensboro saying that your wife is here at 7-Eleven, and she's lost," remembers Rogers.
As the years passed, he had to explain to his grandchildren why Grandma didn't know them. "It's horrible," he says. "It's the longest goodbye you'll ever have in your life."
Nancy died in 2010 at age 61. Rogers was in the depths of grief when a fellow Rotarian asked for a favor. He was the district chair of an effort called Coins for Alzheimer's Research Trust, or CART Fund, which raises money from Rotary members to support Alzheimer's research grants. He had to quickly leave town to care for an ill family member and asked if Rogers could step in and take over his duties.
"I jumped in the car, went to 51 Rotary clubs in three months, and drove 1,200 miles, and that was my introduction to CART," says Rogers. At the clubs, he encouraged members to empty their pockets into a little blue bucket. Each coin donated would go on to fund early-stage research on Alzheimer's. "I did it to honor Nancy."
Twelve years later, Rogers is a regional director for CART. When he travels to talk to Rotary clubs in North and South Carolina, he always asks the same question: "How many of you have been touched by Alzheimer's?" Invariably, at least 50 percent of the room raises a hand. That's because there's no cure or effective and accessible treatment. And there's much work to be done.
Some of that hard work has been made possible by CART, which started with an idea that came to longtime South Carolina Rotarian Roger Ackerman in the middle of the night back in 1995.
Ackerman was a go-getter, a problem solver, an ideas man. An active Rotary member since the 1960s, he relished the way Rotarians tackled different community challenges. But he puzzled over how Rotary members, or anyone, could help solve Alzheimer's, which had also touched his family.
Over nearly two decades, he and his wife, Deane, had watched their "Mother Love" — Deane's mom and Ackerman's mother-in-law, Rae Wodis — slowly lose herself to the disease. In the last four years of her life, she lost the ability to communicate. She couldn't remember who her family was.
"I cannot give you an adjective to describe the heartbreak to a family to see someone you love absolutely in a living-death status," Ackerman recounted during a Rotary presentation in 2013. "Can you imagine not being able to tell someone that you're hungry? That you need to go to the bathroom? That your throat hurts? Things that we do every day and take for granted. No one should have to do that."
During the time that his mother-in-law was suffering, he couldn't find research that gave him hope for an end to the disease, or even a way to treat it. That meant that other families were bound for the same tragic road he'd gone down, and that pained him.
That's when the early-morning inspiration hit. Ackerman had been fast asleep in his bed in Sumter, South Carolina. The day before, he'd had lunch with a friend, who had told him that $8 billion to $9 billion in coins changed hands every day in America. He jolted out of bed, realizing that pocket change could be the key to a cure.
Ackerman waited for the sun to rise and then called the president and president-elect of his Rotary club. He explained his vision. He wanted the effort to be straightforward: Place a little blue bucket on a table and ask Rotarians to toss in their pocket change at each meeting. It would be called the Coins for Alzheimer's Research Trust Fund, or the CART Fund, and all money would go to research grants.
The club's board of directors took it to a vote and unanimously agreed to start a trial program in late 1995. In seven months, the initiative raised $4,200.
To Ackerman, that was proof his concept could work — that people were willing to empty their pockets, and that pennies, nickels, dimes, and quarters could add up to some serious cash. If other clubs joined the effort, the sky was the limit. To rally support, Ackerman traveled to different clubs — first in the area, and then around South Carolina, and eventually to clubs in North Carolina, Georgia, and beyond — to talk about a disease that today affects 1 of 9 older Americans. He urged clubs to add a little blue bucket to meetings and drop their coins in. He believed in the CART Fund so strongly himself, it didn't take long to get buy-in.
Ackerman died in 2018, but his legacy lives on. "He had the ability to persuade you to hitch your wagon to his horse," remembers Rod Funderburk, board president of the CART Fund and a member of the Rotary Club of Lake Murray-Irmo, South Carolina. "I mean, it was a crazy idea. But Roger had the ability to persuade people."
In 1999, that loose change added up to $100,000, and the CART Fund, with guidance from the American Federation for Aging Research, made its first grant to a team at Emory University led by neurologist Allan Levey. He was researching whether biological markers in a person's blood could be an early indicator of Alzheimer's disease.
That grant was life-changing for him and his lab. "It came at a really important time early in our career and our trajectory, and was sufficient to influence the course of research for us for the next several decades," recalls Levey, who today is the director of both the Goizueta Alzheimer's Disease Research Center and the Goizueta Institute @Emory Brain Health.
Although Levey and his team weren't successful in developing a blood test, he says that the project opened a new era of research for them — and led to millions of dollars in grants that would follow. Today, they lead national programs for understanding the causes of Alzheimer's disease, its biological markers, and possible treatment targets.
But it wasn't just the funding that shaped Levey's life and his career. He became close friends with Ackerman and other Rotary members involved with the CART Fund. He admired what they were doing and saw that he could fill an important role in the organization. "Roger always put me in the role of helping me translate science into lay understanding for him and the rest of the CART board," Levey says.
That role was formalized in 2006, when Levey became part of CART's scientific advisory board. He helps select several annual grant recipients and translates their work into plain language that makes sense to Rotarians without a science or medical background. The selected scientists vary by interest and background, but they tend to have one thing in common: They're pursuing ideas that wouldn't receive traditional funding, usually because they don't yet have the data to support the idea at hand.
"The CART approach is to invest in young, promising scientists and research that is higher risk but could have a higher impact if that research could be sustained," says Levey. "So it's really to help get the seed funding for the initial experiments that will then grow and gather support to really take off."
Over about two decades, Ackerman attended more than 200 Rotary functions as a guest speaker, telling the story of his mother-in-law and the CART Fund, and how Rotarians could help unlock new understandings about the disease.
When he talks to Rotary clubs, Norm Rogers asks: “How many of you have been touched by Alzheimer’s?” Invariably, at least 50 percent of the room raises a hand.
"He's the reason that CART is successful. It's a brilliant concept. And it's so easy to explain," says Bill Shillito, chairman of the Alzheimer's/Dementia Rotary Action Group, who served as CART Fund's executive director from 2009 until retiring in May 2022. "But it would have died without Roger's passion. He was courageous and tenacious."
Alzheimer's, a progressive neurological disorder and the most common type of dementia, mostly affects people older than 65, though it can develop in those who are younger. The disease, which causes memory loss, disorientation, personality changes, and other symptoms, has grown more prevalent in recent decades. Between 1990 and 2019, global incidences of Alzheimer's disease and other dementias increased by nearly 150 percent, according to a study published in Frontiers in Aging Neuroscience. The older adult population in the U.S. is expected to grow, and by the year 2050, the Alzheimer's Association predicts that the number of Americans 65 and older with Alzheimer's may reach more than 12 million — nearly double what it is today.
Ackerman found purpose in CART, and now others do too, like Funderburk, the CART Fund board president. In the mid-1980s, when Funderburk was an engineering supervisor, a remarkable engineer named Joseph Bearden joined his team. "He was brilliant," Funderburk says. "We built chemical plants all over the world." When Bearden retired, Funderburk stayed in touch. At age 70, the engineer was diagnosed with Alzheimer's, and Funderburk watched with sadness as his essence seemed to fade. "The last 3½ years of his life, he knew nobody. He was in a shell by himself," says Funderburk. "He'd been the most organized engineer I've ever met. But Alzheimer's took over." When Bearden died, Funderburk was at a loss. "I looked around and asked: How do you solve this thing?" he says. That led him to the CART Fund.
Tiffany Ervin, the fund's executive director and a member of the Rotary Club of Hendersonville-Four Seasons, North Carolina, says that most of the people involved have a personal connection to the disease. Her mom started showing signs of Alzheimer's in 2010, at age 70. Watching her lose her memory was agonizing. In particular, Ervin recalls a Mother's Day visit. "She said, 'Why are you wanting to spend the day with me today? Wouldn't you rather be with your mom or your family?'" she recalls. "It was like a knife to my gut." Shortly after her mom died in 2018, Erwin was invited to become vice president of public image for the CART Fund. She says that it gave her purpose and a platform to share her mom's story. Today Ervin says, "Everywhere I go, someone has an Alzheimer's story, unfortunately. Our goal is for people to no longer have an Alzheimer's story."
Over the last two-plus decades, pocket change — and donations made at cartfund.org, which accepts funds in an increasingly cashless society — has accumulated more than anyone had dared to dream. Today, 41 Rotary districts contribute, and, as of last year, the donations had amounted to $11.2 million dollars, funding 64 grants. Over that time, 100 percent of every dollar donated has gone to research, just as Ackerman insisted. Those grant recipients have gone on to receive many millions more in traditional funding, from sources such as the National Institutes of Health. "We have a huge percentage of success," says Funderburk, "if you count success as a researcher that proves their hypothesis and gets additional money." Reflecting on past grant recipients, Levey says that many of those early-career scientists have gone on to become prominent figures, even referring to them as "giants in the field."
CART-funded research has been wide-ranging and experimental; some of the researchers have called their own studies "provocative," "high-risk," and "highly controversial." In 2022, CART awarded grants to three research teams for a total of $850,000. Those researchers are studying ways to transport protective antibodies into the brain; whether medications for other illnesses, such as malaria, might potentially slow Alzheimer's; and the role ancient viruses may play in diseases such as Alzheimer's.
Beyond the impact of the research, the CART Fund has paved the way for relationships and experiences that Rotarians and researchers relish. Grant recipients are asked to travel at their own expense to the annual CART Fund board meeting in May in South Carolina for the announcement of the winners. There they have dinner with CART Fund board members and present their research to Rotarians.
Norm Rogers says he has learned an extraordinary amount about the disease through these meetings. He channels the grief over his wife's death into educating others and encouraging them to empty their pockets into that little blue bucket. "We go back and keep it at a third grade level and explain it to our clubs," he says. "And it's proven that when we tell them what we're working on, they say, 'Oh Lord, we need to give you more!'"
The scientists, too, take away more than funding. All of the 2022 grant recipients say that they are energized by the dedication of the Rotary members. "They have an incredible passion," says grant recipient Peter Tessier, the Albert M. Mattocks Professor of Pharmaceutical Sciences and Chemical Engineering at the University of Michigan. "After spending time with them, I went back and was completely humbled and honored and appreciative and impressed. I've not really met a group like that. They're really unique."
And Jerold Chun, a 2022 grant recipient who is a professor and senior vice president of neuroscience drug discovery with the Sanford Burnham Prebys biomedical research institute in La Jolla, California, was similarly moved and grateful to be a part of CART. "They gave their blood, sweat, tears, and money to allow us to take a crack at this," he says.
“Everywhere I go, someone has an Alzheimer’s story, unfortunately. Our goal is for people to no longer have an Alzheimer’s story.”
Chun believes that this kind of grassroots motivation is key to helping scientists pursue new ideas and gain a deeper understanding of the brain. "There's so much that we as scientists don't know," he says. "Every effort to better define how our brains work is an effort worth pursuing and supporting."
That notion, in fact, was what was on Levey's mind in the fall of 2022 when he read about promising results in a late-stage trial for a new drug, developed by companies Biogen and Eisai, that seems to modestly slow cognitive decline in people with early-stage Alzheimer's. "It's the first drug that really seems to have consistent benefits in slowing down the course of Alzheimer's disease," he says. "That's a huge breakthrough to have the first treatment that looks like it's on our doorstep."
Of course, his mind went to CART Fund research. While the drug didn't come from the initiative, he says that it rests on the shoulders of thousands of researchers and decades of work, and those little blue buckets have been a part of that. You could say that Alzheimer's research has been building like pocket change. It started small and fragmented, but with dedication, determination, and vision, it has flourished.
This story originally appeared in the May 2023 issue of Rotary magazine.