In 2004, Jeff Morby, Jacqui Morby, Henry McCance and Phyllis Rappaport co-founded Cure Alzheimer’s Fund to dramatically pick up the pace of Alzheimer’s research. The nonprofit’s mission is to fund research with the highest probability of finding a cure for the progressive, degenerative brain disease.
To that end, Cure Alzheimer’s has raised more than $110 million over the past 15 years, funding research projects focused on understanding the pathology of the disease, including the underlying genetics, the brain-blood barrier and the role of inflammation in the disease.
The Wellesley, MA-based nonprofit has a unique approach: Because their board of directors pays for all of the organization’s overhead and administrative costs, 100 percent of donations go directly to research.
“We believe putting the money to work immediately is important, and that every penny that the donor gives should go as fast as possible to that research,” explains President and CEO Tim Armour.
We spoke with Tim and Barbara Chambers, Cure Alzheimer’s Fund’s Senior Vice President of Marketing & Communications, to learn more about the organization’s mission, the “big, not incremental” research it supports and COVID-19’s impact on Alzheimer’s patients and their families.
Why has finding treatments and, hopefully, a cure for Alzheimer’s remained relevant through the years?
Tim: As of 2020, six million people in the United States are currently diagnosed with Alzheimer’s. Probably closer to 24 or 25 million Americans show signs of the disease; three-quarters of those are never officially diagnosed. Fifty million people are diagnosed worldwide. One in 10 people in the United States aged 65 or older and one in three people aged 85 and older are diagnosed with the disease.
In 2020, nearly $300 billion will be spent on care for Alzheimer’s disease, while the federal government has allocated about $2.8 billion for research through the National Institutes of Health.
Also, women are hit particularly hard by this disease. Two-thirds of the patients are women, and we don’t know why. One of Cure Alzheimer’s Fund’s very high-priority research objectives is to find out.
How has COVID-19 affected Alzheimer’s patients and their caregivers?
Tim: The current crisis has had a powerful, very negative impact on not only Alzheimer’s patients but also their families. Families are often involved in feeding, care and calming patients, even at care facilities. When relatives can’t be at facilities, somebody else is caregiving, which is very disruptive for an Alzheimer’s patient. And in assisted living facilities where the staff has been pared back and gotten sick, the number of patients per staff member has skyrocketed.
Barbara: Those with Alzheimer’s need to be social. During the pandemic, they haven’t been able to; they are generally left in their room, as opposed to being in common areas with activities and social engagements.
How has the pandemic affected the pace of research?
Tim: COVID-19 has taken key researchers out of their labs. The last two or three years in Alzheimer’s research have been really, really successful and different from the first 110 years, and COVID-19 has slowed that momentum.
Barbara: Researchers are eager to get back to work, but now they have a little respite so they can evaluate their data. They’re so busy that sometimes they don’t have a chance to dig deep into the data to the degree they would like, and that’s part of what they’re doing right now.
Cure Alzheimer’s Fund has enabled research breakthroughs, including recent findings at the University of Southern California, that people with the APOE4 gene are more likely to develop Alzheimer’s and could benefit from early treatment. Why is this significant?
Tim: About 60 percent of Alzheimer’s patients have the APOE4 gene. Since its relation to Alzheimer’s was identified years ago, the natural assumption has been, “This must be a bad gene because it causes Alzheimer’s disease.” Some genes affect physiology badly, but they also have a job to do. So the question is, why is it causing harm? And scientists just said, “It’s causing Alzheimer’s, so we have to find a way to stop what it does to cause Alzheimer’s.” Fair enough, but what does it do?
For about a decade, Cure Alzheimer’s Fund has sponsored a consortium of Alzheimer’s researchers to answer that question, and that initial effort dissipated into individual activities. Then, we received a generous grant, and so there’s very, very good work being done on the role of APOE4 right now.
Barbara: Broadly speaking, you get one-half of your genes from your mother and the other half from your father. If you get one copy of APOE4, you may have some chance of getting Alzheimer’s. But if you get a copy of that gene from both parents, then your risk of getting Alzheimer’s disease goes up by 12 times. So that’s one of the reasons to investigate: What happens with that gene that if you get a pair of APOE4, dramatically escalates your risk of getting Alzheimer’s disease?
Cure Alzheimer’s Fund has four key principles. How do those set your organization apart from others with a similar focus?
Tim: The first core idea was to fund great researchers who have big — not incremental —ideas, and need seed money because they don’t yet have the data to get funding from more risk-averse places like the NIH and big foundations.
The second principle is basing the science on high integrity, providing a quick, high-integrity review to projects without a lot of administrative work and bureaucracy. We can turn around a complex grant proposal in about three weeks.
The third is collaboration. We facilitate ways for scientists to collaborate frequently; we’ve long used conference calls.
And fourth, the board pays for all of the overhead expenses. All of the donations that everybody else gives us goes directly to research, and we have no endowment. The board invests in us when it will help generate resources. Right now, for example, we are adding staff.
Barbara: On top of those four key principles, many of us in the organization hadn’t previously worked on behalf of the disease. We come from very diverse backgrounds. I don’t come from a nonprofit background. So from my perspective, following what every other nonprofit does is not necessary to be successful — we don’t have walks, and we don’t have galas. We don’t advertise.
What role does the board play in the vision and long-term sustainability for Cure Alzheimer’s Fund?
Tim: It starts with a board that understands the differences between a nonprofit organization and a for-profit, and is supportive both financially and organizationally.
From an organizational standpoint, the board needs to understand the difference between being a board member and a staff member, to avoid micromanaging, and to hire people they trust to manage the organization. That’s been a hallmark of Cure Alzheimer’s Fund and what we’ve been able to accomplish.
In terms of fundraising and financial support, board members have to understand that they ultimately have a fiduciary responsibility. They have to have, colloquially put, skin in the game.
For example, our board members put their own money into this. They all stretch to provide the funding to keep this going, and we are actively recruiting more board members with the wherewithal and the will to sustain and grow this organization.
[Photo credit: Courtesy of Cure Alzheimer's Fund. Rudy Tanzi, Ph.D., serves as chair of the Cure Alzheimer's Fund Research Leadership Group.]