In a 2017 blog post titled “Why I’m Digging Deep into Alzheimer’s,” Bill Gates announced he had invested $50 million in the Dementia Discovery Fund to support startups “as they explore less mainstream approaches to treating dementia.” As the richest man in the world at the time, Gates did not fit the mold of a typical neuroscience research donor. Nonetheless, his essay encapsulated why and how funders were supporting cutting-edge work.
“Thanks to scientific advancements, fewer people die young from heart disease, cancer and infectious diseases,” Gates wrote. But as people live longer, many of them will be diagnosed with age-related neurological disorders, thereby creating unprecedented demands for prevention and treatment. “Absent a major breakthrough,” Gates said, “expenditures will continue to squeeze healthcare budgets in the years and decades to come.”
By funding startups conducting high-risk, high-reward research, Gates channeled the venture philanthropy mindset in support of the neuroscience research field. Also common among biomedical donors, Gates was giving from personal experience “because men in my family have suffered from Alzheimer’s,” he wrote. Lastly, Gates is a prime example of today’s biomedical mega-donor, whose one-time $50 million gift or pledge can eclipse even the annual grantmaking of a private foundation many times over.
Add it up, and Gates’ journey from a bystander to a major neuroscience research benefactor is a familiar one, even if he is an outlier. Concerned with ballooning healthcare costs, donors and foundation program managers, many of whom have a loved one suffering from a debilitating neurological condition, are bankrolling cutting-edge research with the goal of bringing innovative treatments and diagnostics to market.
It’s against this backdrop that we assembled IP’s latest State of American Philanthropy white paper, “Giving for Neuroscience Research.” Based on our analysis of industry reports, recent gifts and commentary from a dozen philanthropic leaders, the paper explores the field’s top grantmakers and research areas, funders’ perspectives on equity, and emerging challenges and opportunities. Here’s an overview of the brief and a few of the high-level takeaways.
Surveying the field
This latest white paper centers on giving to organizations conducting research into neurological disorders such as acute spinal cord injury, Alzheimer’s disease, amyotrophic lateral sclerosis (ALS), autism, brain tumors, epilepsy and seizures, multiple sclerosis, muscular dystrophy and Parkinson’s disease. (A separate IP white paper, “Giving for Mental Health,” looks at funder support for research and treatment for conditions like depression, anxiety, bipolar disorder and schizophrenia.)
“Giving for Neuroscience Research” includes analysis of the field’s top givers, with affluent individual donors providing significant support. It includes mini-profiles on major players like Jim and Marilyn Simons, Sergey Brin and Phil and Penny Knight, as well as a subset of relatively less affluent donors whose support is the funding backbone for most neuroscience research organizations.
We then pivot to the role of public charities, intermediaries and private foundations committed to supporting cutting-edge research and fostering equitable health outcomes. Profiled funders include the ALS Association, Alzheimer’s Association, the Michael J. Fox Foundation, Autism Speaks, the Kavli Foundation and the William K. Warren Foundation. We also look at the philanthropic footprint of corporate funders, whose support flows through corporate foundations or partnerships, as well as community foundations backing research via discretionary grantmaking and donor-advised funds.
The big issues
We identified three research-related areas receiving substantial philanthropic support, the first of which is understanding the brain’s complexity and how basic research can yield findings that can be applied to multiple fields.
“The brain is the most complex system known to humankind,” said Kavli Foundation Life Sciences Director Amy Bernard. “We still don’t have a system of understanding the brain as an organ like the way we do a kidney or a lung.” This lack of knowledge inhibits researchers’ efforts to drive advancements in basic neuroscience knowledge and identify connections across interrelated conditions. As a result, researchers and funders are calling on philanthropy to ramp up support for basic research that can unlock clinical breakthroughs across neurological specialties.
As people live longer, funders are exploring how the natural aging process can influence or lead to the development of certain neurological conditions like Alzheimer’s disease. At the same time, countless individuals who aren’t diagnosed with a specific condition will struggle with cognitive decline due to the normal aging process, affecting their quality of life and exacting a toll on the public healthcare system.
Funders are increasingly focusing their attention on navigating this complex terrain. “We are now at the stage where we may have relatively noninvasive, highly accurate tests that allow us to make the distinction between who has pathology in their brain, who’s likely to have Alzheimer’s disease, and who may not have the telltale pathological signs of the disease,” said McKnight Brain Research Foundation (MBRF) Trustee Madhav Thambisetty.
Another huge issue involves funders’ efforts to develop more accurate and affordable procedures to help physicians diagnose a neurological disorder. Seeded with funding from Leonard A. Lauder, Gates and Jeff Bezos, the Alzheimer’s Drug Discovery Foundation has emerged as arguably the most influential player in this space. Jane McIntosh, the foundation’s chief philanthropy officer, said that researchers are in the process of evaluating retinal scans, wearable devices and smartphone apps to “give physicians the tools they need to zero in on the root cause of each patient’s Alzheimer’s and tailor combinations to provide precision personalized medicine.”
Top funding trends
IP surfaced three operationally oriented tactics deployed by funders to support neuroscience research organizations. First, like their peers in the cancer research space, funders adopt the principles of venture philanthropy to accelerate the return on high-risk, high-reward treatments.
In 2022, the Parkinson’s Foundation launched the Venture Philanthropy Fund to support cutting-edge research conducted by companies and nonprofits. One of the foundation’s first moves was allocating $3 million for a strategic partnership with Parkinson’s UK drug development arm Virtual Biotech to advance early-stage drug development efforts. “What I like about Virtual Biotech is how it functions like a pharmaceutical company, developing a broad range of potential therapies, some controlling the symptoms, and some really focusing on the underlying disease,” said president and CEO John Lehr. “The goal is to have a lot of variety.”
This venture philanthropy mindset informs the second strategy in which grantmakers target funding interventions to extricate a promising treatment from “the Valley of Death” — a failure point in the neuroscience research continuum in which a lack of funding or an uncertain path to commercialization prevents a treatment from moving forward.
Funding leaders also stressed the importance of building partnerships across government, academia, industry, venture capital and philanthropy. “If you collaborate, you will accomplish so much more than figuring out how to do it on your own, especially in underserved areas like cognitive aging, where there’s not enough resources,” said American Federation for Aging Research Executive Director Stephanie Lederman.
The brief explores collaborative partnerships spearheaded by the ALS Association, the Muscular Dystrophy Association and the Christopher and Dana Reeve Foundation.
Perspectives on equity
As with all of our white papers, this brief examined funders’ perspectives on racial and socioeconomic equity and how this thinking informs their grantmaking.
Perhaps the biggest equity-related takeaway was the need for philanthropy to close pervasive representation gaps in clinical trials. “There’s a big diversity problem across clinical trials, especially so in Alzheimer’s disease, because these trials typically require a caregiver to accompany the patient to site visits and for evaluations,” said MBRF’s Thambisetty. “And to have these visits happen over multiple times places a huge burden on underrepresented minorities, which is a tragedy in and of itself, because there’s evidence to show that many of these communities are disproportionately affected by the disease.”
In a similar vein, funders are working to understand how underlying economic and social issues contribute to health disparities. This issue is particularly acute when it applies to minorities living with disabilities, a demographic that, according to a report from the U.S. Department of Health and Human Services Advisory Committee on Minority Health, faces a “double burden” that involves inadequate access to quality healthcare, disproportionate rates of mortality and other factors.
This is an area where funders’ research efforts overlap with issues like access to care and quality of life considerations. “For brain tumors, as they affect all races and sexes equally, this means ensuring access to the best care,” said Debbie Robins, director of corporate and foundation relations at the American Brain Tumor Association. “For people who live in low-income or rural areas, this is extremely difficult, as the best care is often centered in academic medical centers and mature community hospitals.”
Funders also stressed the need to ensure that equity is woven into all aspects of the organization. The brief looks at how the American Epilepsy Society advances the careers of doctors from underrepresented groups serving underserved people with epilepsy and the National Multiple Sclerosis Society’s efforts to determine why people of specific ethnicities with MS tend to experience a more aggressive form of the disease.
Opportunities and challenges
The brief concludes by laying out a to-do list for funders and research organizations moving forward. The first action item encourages fundraisers and intermediaries to make a consistent and compelling pitch for basic research.
Debby Hecht, CURE Epilepsy senior director of marketing and communications, told me that she sometimes sees an “I want it now!” mentality among donors who expect their support to generate immediate breakthroughs. “But basic science is the backbone, and if you have that, you’re not going to get the cure,” she said, noting that her team works with researchers to craft impact stories to show funders that their donation for basic research led to a measurable outcome.
Funding leaders underscored the importance of incentivizing data sharing among research organizations. Examples in the brief include the Kavli Foundation’s Open Data in Neuroscience program and CURE Epilepsy’s efforts to develop “common data elements” to allow researchers to access standardized data across the spectrum of research.
Arguably the biggest challenge facing funders is closing the clinical trial representation gap. To achieve this aim, grantmakers are pulling from a post-pandemic playbook that includes embracing decentralized trials and telemedicine to minimize the burden of participation and expand the number of recruits, and build partnerships to educate community members about the importance of clinical trials.
Funders are also boosting investment in prevention research. The brief lists three areas where organizations can move the needle — identifying links between neurological conditions and behavioral and lifestyle factors, COVID-19 and human-caused changes to the climate.
Speaking to IP, the Parkinson’s Foundation’s Lehr spoke for the countless number of funding leaders who are pushing the neuroscience field forward with a profound sense of urgency. “The world’s population is aging and technological and medical breakthroughs will only strengthen this trend, and as a result, more people will be diagnosed with age-related neurological disorders like Parkinson’s and Alzheimer’s,” Lehr said. “Addressing these diseases through research should have enormous consequences, not just for those living with the disease and their loved ones, but for society, as the cost of care is increasing in both financial and human terms.”
Click here to see all of the white papers in IP’s State of American Philanthropy series.