Intensive Treatment: What a Deep-Pocketed Donor Can Do for an Overlooked Disease

The more we follow medical research, the more we're struck by how a single deep-pocketed funder can revolutionize the understanding and treatment of diseases or conditions that otherwise go overlooked. 

For example, we've written about how the Sandler Foundation put over $100 million into asthma research, ushering in a new era of breakthroughs on that disease. We've also written about how even bigger investments by the Simons Foundation in autism research has transformed understanding of that condition. The Hutchins Family Foundation is another funder that's brought game-changing money and energy to a neglected area—in this case, chronic fatigue syndrome. We should note that all these foundations are piloted by living donors. 

That's also true of the Steven and Alexandra Cohen Foundation, which—as far as we can tell—have quietly become the top private funder of research on Lyme disease in recent years. The couple has given some $50 million to this area, distributed over more than 20 projects. 

For perspective, most of the foundation grants given for Lyme disease over the past decade have been under $100,000. The NIH spends around $25 million a year on Lyme research, a rounding error for an outfit that grants billions annually. 

You can see why Lyme doesn't attract the big bucks, whether public or private, since it very rarely kills people. On the other hand, there are 300,000 new cases of Lyme every year, ranking it among the top infectious diseases in the country. About a half-million Americans suffer from a chronic form of the disease. And those numbers don't begin to capture the dread around Lyme in U.S. communities, especially in the Northeast. 

The Cohens live in Connecticut, ground zero for Lyme, and their interest in the disease is personal. Alex has written about this on her blog:

Not only did I get Lyme more than five years ago, I have been suffering the side effects ever since. My life will never be the same. Through our Foundation, I am exploring ways in which we can more effectively diagnose and treat Lyme disease. I know it will be a long journey of working with leading researchers in this field, but I am up for the challenge and I am not giving up!

With a fortune of over $12 billion, it's a big deal that Steve and Alexandra Cohen have developed an interest in Lyme. The Wall Street couple are active philanthropists who been ramping up their giving lately. We've highlighted their strong interest in education reform and charters, children's hospitals, as well as the arts. We've talked about their support of veterans, too, including a recent $275 million gift to establish a national effort called the Cohen Veterans Network. Alex and foundation staff also recently hit the road, traveling through America's heartland and interfacing with people and nonprofits in an often forgotten section of the country. 


Much of the Cohen couple's philanthropy is personal. Their interest in veterans, for instance, is spurred in part by Steve Cohen's son who joined the Marine Corps and was deployed in Afghanistan for a time. Alex's experience in giving birth to five children helps explain the couple's large hospital gifts. So their interest in Lyme fits a pattern. 

The Cohens aren't the only newcomers to the Lyme beat. Two other funders in this space we've written about are Amazon exec Jeffrey Wilke and his wife Liesl, who suffers from the disease. The couple gave $2.13 million to launch of the Wilke Lyme Disease Project at Seattle-based Institute for Systems Biology (ISB). Recently, the Cohens directed $3 million to ISB, to support the now named Wilke Cohen Lyme Disease Project. 

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Between the Wilkes, the Cohens, as well as Jeff and MacKenzie Bezos, and the Bay Area Lyme Foundation, the project now has commitments totaling $6.1 million in pledges and cash. 

Apart from the recent gift to ISB, the Cohens have supported lyme efforts at Tufts University, where they've funded vaccine research, Northeastern University, Columbia University, Mt. Sinai, and elsewhere. Overall, the foundation says that it aims to "demonstrate the impact of this disease on vulnerable communities and educate healthcare providers on the latest tools to diagnose and treat Lyme disease."

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