Alzheimer’s disease, by far the most common form of dementia, affects more than 6 million Americans, causing a steady loss of cognitive function, memory, a fundamental disappearance of the sense of identity, and eventually, death. Efforts to develop drugs to slow or stop the progress of the disease have been disappointing, and in recent years, some pharmaceutical companies have quit trying or avoided the field altogether. But without effective treatments, the Alzheimer’s problem will only grow worse — currently, cases are projected to double to 13 million by 2050.
A small cadre of philanthropic givers and disease-specific charitable organizations, however, has worked hard to help keep Alzheimer’s science moving forward and the drug-development pipeline flowing. But no name in philanthropy is more closely associated with Alzheimer’s than the Lauders — three generations of the family whose wealth accrued from the cosmetics company started in 1946 by Estée Lauder, and later successfully led by her son Leonard A. Lauder. It’s now the second-largest cosmetics company in the world.
About 25 years ago, Estée directed her sons Leonard and Ronald S. Lauder to devote significant philanthropy from the family trust to the search for Alzheimer’s treatments. As with so much biomedical and disease-related philanthropy, there’s a strong personal connection — Estée herself had Alzheimer’s when she died in 2004.
Leonard and Ronald established the Alzheimer’s Drug Discovery Foundation (ADDF), a venture philanthropy that invests in companies working to develop drugs to prevent, treat and cure Alzheimer’s. The Lauders have devoted millions to the ADDF, which also accepts donations from the public, including from several uber-wealthy donors and families, including Jeff Bezos, the Dolby family, Bill Gates, the Schwab family and MacKenzie Scott.
In its 25-year history, the ADDF has awarded nearly $250 million to fund drug development. But recently, the Lauder family — Leonard, Ronald and the entire third generation of their family — made a commitment of $200 million, its biggest single donation to the ADDF. The money is expected to be granted over the next 15 years. That influx of funding is coming at what may be a pivotal point in the development of new medicines, says Mark Roithmayr, CEO of ADDF.
Some pharma companies have recently developed drugs to target the amyloid plaques in the brain that are associated with Alzheimer’s. When tested alone, they’ve demonstrated improvement in some studies, but yielded mixed results in others. Roithmayr said that research has opened new pathways to treatments based on evolving understanding of the biology of aging, including the role of inflammation, vascular issues, genetics, tauopathies and mitochondrial function. Some 75% of new drugs in development are aimed at these other pathways.
“This very rich pipeline of alternatives will be complementary to the amyloid treatments,” Roithmayr said. “It’ll be combined therapies and precision medicine — and not only precision treatment, but precision prevention.”
To advance understanding of these treatments, ADDF is funding more than 35 clinical trials of Alzheimer’s drugs. Another important avenue of research and funding for ADDF, said Roithmayr, is the development of “biomarkers” for Alzheimer’s — such as a recently developed blood test for the condition — that can help determine if a person has Alzheimer’s, or is at risk of developing it. In fact, ADDF funded development of a PET scan technique that can reveal presence of the disease, useful both in assessing patient health as well as in the study of new drugs.
Scientists say the disease process may be occurring 20 years before symptoms appear; such early identification, combined with treatments to slow the disease, could push out the age at which symptoms of dementia appear. Since Alzheimer’s tends to occur later in life, a delay or slowing of symptoms by even a few years could make a big difference to patients and their families, and alleviate the many personal and societal costs the disease brings.
There are a handful of Alzheimer’s organizations and funders, each with their own approach and interests, including basic research, drug development and support for patients and their families.
ADDF, for example, focuses exclusively on drug development, or translational science. That means it aims to translate the science discovered in the laboratory to studies with patients by funding early phase clinical studies. Then, should those early-stage clinical studies yield promising results, the baton can be handed off to deeper-pocketed pharmaceutical industry companies that can carry out the vastly more expensive, later-stage clinical studies needed to advance the drug to approval and the marketplace. That phase of drug development is far beyond the bank accounts of most philanthropists.
It’s those early studies that philanthropy can fund, says Roithmayr, that have been proving crucial to the continued advance of Alzheimer’s treatments despite the difficult and slow progress.
The Alzheimer’s Association, another key Alzheimer’s-oriented charity, funds a broader slate of initiatives, including research, advocacy, awareness and patient services. It’s described as the largest Alzheimer’s nonprofit. A major element of its presence consists of the local association chapters that assist caregivers and people with Alzheimer’s.
The Rainwater Charitable Foundation, a Texas-based private family foundation established in 1991, originally focused funding on children’s education. But in 2009, it launched a second funding program called the Tau Consortium to accelerate treatments for neurodegenerative diseases called tauopathies, which are now adding to the body of knowledge surrounding Alzheimer’s. It awards a substantial prize of up to $2 million to investigators in tau-related disease, and annual $250,000 grants in neurodegenerative disease.
The Brightfocus Foundation takes what it calls a “360-degree research approach” to the science around Alzheimer’s, funding research involving genetics, amyloids, tau, the immune system, biomarkers and more.
The Cure Alzheimer’s Foundation is dedicated exclusively to funding research toward a cure for the disease, with a focus on the basic science of the brain and Alzheimer’s. It funds an Alzheimer’s Genome Project, stem cell research, immune system research, and other science. It has funded about $170 million in research to date. The ADDF is partnering with Cure Alzheimer’s in some of its genetics research.
Compared with many areas of health and medical research, philanthropy has played an outsized role in Alzheimer’s disease. No drug has yet shown it can make a clear and significant dent in the disease or its symptoms. As noted above, that has caused some pharmaceutical companies to turn away from the Alzheimer’s population. But as the U.S. population ages, not to mention those of other aging countries, the burden of the disease is too great to be left unaddressed. Organizations like the ADDF and its fellow Alzheimer’s funders, however, have kept potential treatments moving through the pipeline, and may yet draw more pharma companies — those with the resources to get a drug to market — back to the mission. These few funders shouldn’t have to do it alone, however, and there’s a huge opportunity for additional donors to get involved.
