Which Foundation Is Taking the Lead on Sickle Cell Disease?

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Sickle cell disease affects about 100,000 Americans and millions of other people worldwide, the Center for Disease Control estimates. It’s the most common genetic blood disorder in the U.S. The Doris Duke Charitable Foundation is on the forefront of private grantmakers that want to do something about it.

Seven projects working on a cure for sickle cell disease have received about $6 million in awards in 2017 to support research through the foundation’s medical research program. The grants are the first in the foundation’s Sickle Cell Disease/Advancing Cures awards.

The funder supported sickle cell research in the past through other award programs. The foundation’s Innovations in Clinical Research Award exclusively went to funding sickle cell research from 2009 to 2015, though the disease is not explicitly the focus of the award.

Several of the new award’s winners focus on the genetics of the disease as a possible cure. Others focus on drugs and more effective bone marrow transplants as paths to treat the disease.

Right now, a bone marrow transplant is the only chance for a cure. The procedure is risky and finding a donor is difficult. Bone marrow transplants are rarely performed on people older than 16. Most treatments for sickle cell disease focus on minimizing symptoms.

The Doris Duke Charitable Foundation is a notable funder in the medical research field. The foundation last reported $1.7 billion in total assets and $91.7 million in annual grantmaking. The foundation also supports the performing arts, environmental conservation and the well-being of children.

Much of the foundation’s medical funding takes the form of awards through its Medical Research Program. Grants fund the prevention, cure and treatment of diseases. Encouraging careers in clinical research and advancing biomedical research are the focus of several of the foundation’s awards.

The Doris Duke foundation is one of the rare funders to put money behind sickle cell research in a big way with a dedicated, recurring funding mechanism.  

The Thrasher Research Fund, which focuses on pediatric medical research, has put some money toward sickle cell treatment through grants awarded to lab investigators, but doesn’t count the disease as one of its core causes. The Robert Wood Johnson Foundation and Walmart Foundation have also awarded grants to sickle cell research, but these have mostly been one-offs.