Genetic disorders and diseases are myriad, and difficult to understand. Each one, from mental retardation to Tay-Sachs disease to color blindness to cystic fibrosis, is caused by a specific gene or group of genes, and there tends to be little overlap amongst disorders. In other words, a breakthrough discovery in the mental retardation realm won’t translate into curing cystic fibrosis.
Add to that the fact that relatively small numbers of people are afflicted by such genetic conditions (just 30,000 Americans have cystic fibrosis) and you’ve got a group of underfunded disorders.
But lately, with the rise of genetic medicine, foundations seem to be breaking through the haze, finally gaining ground on the causes and potential treatments for these disorders.
Take the Duke Endowment, for example. The Charlotte, North Carolina-based organization, which has no affiliation with either Duke University or Duke Energy, just socked $2.75 million into the Greenwood Genetic Center in Greenwood, SC, to fund its research into learning how to treat genetic disorders and diseases.
This realm of research is relatively new for the Center, which was founded in 1974 but only relatively recently began working on treating genetic diseases and disorders, in 1996. As the Center’s focus has expanded, it has attracted the attention of serious donors, including the Self Family Foundation, which in 2013, contributed toward a joint $4 million gift with the State of South Carolina to create the Self Family Endowed Chair in Human Genetics.
Just this past February, in fact, Self Regional Healthcare, an affiliate of the Self Family Foundation, contributed $5.6 million towards meeting research and treatment goals. And now the Duke Endowment is hopping on board as well.
For its own part, Duke seems to favor unsung diseases and disorders, spots where traditional funding is scarce and research lags. Last month, we highlighted Duke grants to expand North Carolina’s telepsychiatry network, which, like this grant to the Greenwood Genetic Center, rested on applying novel technologies toward treating a difficult or neglected disorder (or realm of disorders).
Since the recession, Duke has been forced to get more choosy with its grant giving, so it’s interesting to see how the endowment has narrowed down its grantmaking approach in recent years. We look forward to the day when Duke’s healthcare grantmaking will be restored to pre-recession levels. But despite the generosity of this gift, we know we aren’t there yet.