Situation
Individuals living with sarcoidosis often go undiagnosed for years, living with symptoms such as shortness of breath, extreme fatigue, difficulty breathing, joint pain, fever, and eye inflammation. These symptoms can last anywhere from a couple of years to a lifetime—and there is no cure. Given the lack of understanding around sarcoidosis, diagnosed patients have few treatment options, and the available options are accompanied by extreme side effects such as diabetes or weight gain. Left untreated, sarcoidosis can lead to severe organ damage and even death.
Sarcoidosis attracts fewer federal research dollars than other inflammatory conditions, which is in part why there are so few medical professionals attracted to working in the field. The Ann Theodore Foundation came to the Center for Strategic Philanthropy (CSP) looking for guidance on how it could use its philanthropic resources to help identify causes, determine criteria for proper diagnoses, and propose effective treatments.
Approach
In partnership with the Ann Theodore Foundation, CSP dug deep into the landscape and identified several critically underfunded areas where philanthropic dollars could help to advance the field and drive progress toward better treatments and eventually a cure for sarcoidosis. CSP identified a number of barriers that could be addressed to advance what science understands about sarcoidosis and how it is treated.
As CSP prepared to publish the landscape analysis and recommendations into a Giving Smarter Guide (GSG), the Ann Theodore Foundation chose to release the GSG alongside a new funding program, the Ann Theodore Foundation Breakthrough Sarcoidosis Initiative. This program was developed with help from our Scientific Advisory Board, made up of experts in the sarcoidosis field and from other disciplines.
Outcomes and Next Steps
The sarcoidosis Giving Smarter Guide and the first request for proposals for grant funding from the Ann Theodore Foundation were released in late 2021. Of the 30+ teams who applied, six teams were selected for a total of $3.2 million in funding over a two-year period.
CSP continues to partner with the foundation. In October 2021, CSP helped launch the Ann Theodore Foundation Breakthrough Sarcoidosis Initiative. This grant program has focused on funding the basic science and underlying biology of sarcoidosis, and continues to strive for new ways to propel the field.
In July 2022, CSP, with support from the Ann Theodore Foundation, hosted the first meeting for scientists who received funding to study the field. The purpose of this meeting was to help the Ann Theodore Foundation identify next steps, develop new funding strategies, and further strengthen awareness and collaboration among the sarcoidosis community. During this meeting, the investigators expressed an interest in having more touchpoints to discuss their research and other ideas throughout the grant program. CSP will coordinate quarterly check-ins among the investigators starting in fall 2022.
Cycle 3 of this grant program will be released in the fall of 2023, supporting the next cohort of sarcoidosis researchers who seek to understand the biological basis of the condition.