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Having a poorly understood condition is frustrating. From the doctors’ visits, to multiple ineffective treatments, to reductions in quality of life, it can feel as though there is little hope.
Such is the case for many people with sarcoidosis, an inflammatory condition that can affect almost any organ in the body and has no known cure. For some people, sarcoidosis resolves in a couple of years, but for others it can be a lifelong battle. Symptoms can include skin rashes, difficulty breathing, worsened eyesight, and joint pain. Despite the fact that it can affect most organs, research has been focused on mainly the lungs and the heart. Many of the diagnosed cases are found in the lungs, but much can be learned about the disease from studying other organ systems.
Sarcoidosis tends to affect different segments of the population with varying prevalence. In the United States, African-American women have the highest rates, while outside of the U.S. people in Scandinavian countries generally have the highest rates of sarcoidosis. This condition is thought to require both genetic susceptibility and environmental triggers for its onset, though the specifics of these are not well understood. Understanding why some groups of people are impacted more commonly and severely than others is critical to understanding the complexity and holistic experience of sarcoidosis.
Historically, federal funding for sarcoidosis research has been low, and the need for progress reflects the need for increased funding in the space. The grant submissions that are submitted to the National Institutes of Health are often not funded due to a lack of tools present to perform research, including specific diagnostic tools and animals that can exhibit sarcoidosis-like symptoms.
This is where philanthropy could enter and change the lives of millions living with sarcoidosis. Philanthropic capital could be the lever that empowers individual scientists who want to develop new tools and make new discoveries about the biological facets of sarcoidosis. There is perhaps an equally vital way that philanthropy could make a difference in the field: by bringing new perspectives and ideas to the forefront.
Sarcoidosis is a complex condition that can affect many parts of the body, and resembles some other diseases. Bringing in individuals from disparate research fields will expand the number and the variety of hypotheses on sarcoidosis biology, accelerating the rate of discovery in the space. This would potentially address some of the long-standing questions in sarcoidosis—for example, why does sarcoidosis persist for some and not for others? What are the environmental risks? New ideas can help begin to pave the road from frustration to understanding and recovery. While expanding the field, it will be important to bring in both researchers and research participants from underrepresented backgrounds, so that the full breadth and diversity of sarcoidosis can be better understood.
In the Center for Strategic Philanthropy’s latest report, Sarcoidosis: A Giving Smarter Guide, we explore these topics in greater detail, and provide recommendations for philanthropists to help move the field forward more efficiently.
For researchers who are interested in studying sarcoidosis, the Ann Theodore Foundation Breakthrough Sarcoidosis Initiative Request for Proposals is now accepting applications. This grant program will provide funding for up to two years of research. Individuals may submit applications for projects examining the basic science of sarcoidosis, and we invite those who work in related fields and on related diseases to apply as well. The application deadline is Jan. 10, 2022.