A Philanthropy-Backed Hunt for the Genetics of Eating Disorders

A fascinating aspect of today's new philanthropy is the way that big money is flowing into previously overlooked areas of medical research. We've written, for example, about the push by Herb and Marion Sandler to bring new energy and talent to asthma research, and the even bigger effort along these lines by Jim and Marilyn Simons to revolutionize the field of autism research. Just the other day, we wrote about how Steve and Alex Cohen are giving millions to achieve new breakthroughs in understanding Lyme disease. 

Meanwhile, one of Seth and Beth Klarman’s main causes is the study of eating disorders, and the family’s growing foundation is funding an international study to understand the genetic link to anorexia. 

The Klarman Family Foundation has been one to watch in the past five years or so, as its assets have risen to more than $600 million at the close of 2014, nearly doubling since 2011. Seth Klarman is a Boston-based finance billionaire, and his giving, which he does with his wife Beth Klarman, is notable for a $32.5 million gift to establish Harvard's Cell Observatory, lots of funding in Boston, and their backing for Jewish causes and the State of Israel. 

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Amid the foundation’s support for health issues is a standout focus on eating disorders. In particular, Klarman is the funder of the global Anorexia Nervosa Genetics Initiative (ANGI), what’s being billed as the largest ever genetic study of eating disorders. 

Anorexia is a psychiatric disorder that manifests in low body weight and a fear of gaining weight, affecting about 1 percent of the population. Eating disorders have the highest mortality rate of any mental illness, with a strong connection to major depression and suicide. 

The disorder is treatable, but some of the initiative’s early results have shown that only 32 percent of study participants are getting medical help. There is a stigma and tremendous misconceptions surrounding anorexia—mainly that it’s something sufferers choose—but decades of research have indicated that genetics actually plays a major role in who develops it. 

Similar to autism spectrum disorder, the genetic component is more complicated than something like Huntington’s, which you can spot with a simple blood test. But identification of the genes that make people more susceptible to developing anorexia would go a long way toward reducing stigma, developing drug treatments, and identifying people who may need help. 

So ANGI launched to identify the genes associated with anorexia, and started to round up thousands of blood samples in 2013. The project, which spans four countries, is based at the University of North Carolina, and has been pursuing an overall recruitment goal of 13,000 participants. The study recently wrapped up its recruitment stage.

That number might sound like a lot, but as researchers continue studying genomic data in relation to psychiatric disorders, they’ve discovered that meaningful sample sizes begin at around 10,000. In fact, the four-country study is linking up with researchers elsewhere to build their number to 25,000 samples. 

It's actually comparable to current autism research efforts in a couple of ways. For one, there's a big hunt for genetic understanding of the disorder, including a similar philanthropic push to round up tens of thousands of people and their genetic data, led in part by Jim and Marilyn Simons and their Simons Foundation. 

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The Klarmans’ quest to understand eating disorders is a similar example of philanthropists leveraging their money and networking abilities to make an impact on a very personal and challenging mental disorder.

With the couple boosting their philanthropic presence in recent years, it’s possible we’ll see their work on eating disorders expand further, taking after the Simons’ SFARI, which now hosts a number of research initiatives, resources, and grantmaking programs.