Imagine living with a disease so mysterious that few people have heard of it—yet it shapes every part of your daily life. For millions of people living with rare or poorly understood health conditions, their (often devastating) symptoms are compounded by a lack of effective treatments, clear diagnoses, and real hope—not because solutions are impossible, but because funding falls short. With the right support, science can move faster. Philanthropic funding has the power to take bold risks, fuel discovery, and help turn possibility into progress.
For people with sarcoidosis, an uncommon inflammatory condition, the Milken Institute Science Philanthropy Accelerator for Research and Collaboration (SPARC) has catalyzed nearly $12 million in research funding over the past five years through an ongoing partnership with the Ann Theodore Foundation (ATF), a nonprofit organization that has been focused, among other areas, on supporting research toward specific diagnostics and treatments for people with the condition.
Although people with sarcoidosis are at risk of serious complications or even death, the condition has historically been underrecognized and poorly understood in science and medicine.
Sarcoidosis begins with granulomas, tiny clusters of white blood cells that may appear briefly and harmlessly in some people. However, in sarcoidosis, these granulomas persist for too long. They accumulate, invade vital organs, and can cause irreversible damage or death.
The disease rarely announces itself clearly. Instead, it might look like chronic exhaustion, fevers that come and go, aching joints, and relentless brain fog. For others, it tightens the chest, blurs vision, scars the skin, or disrupts the heart’s rhythm. Sometimes sarcoidosis goes away on its own, but it could also last for a lifetime.
Due in part to its variability and to inadequate scientific understanding of its workings, it is difficult to determine whether someone even has sarcoidosis. Currently, it cannot be positively identified with a single test. Instead, diagnosis depends on ruling out many other conditions one by one, which delays answers and leaves many patients misdiagnosed, dismissed, or untreated while they continue to suffer.
However, diagnosis is only half the battle. Treatment options are blunt and unforgiving—mostly limited to corticosteroids and chemotherapeutics, both of which can have severe side effects. As a result, some patients stop taking medication entirely. Their choices are painfully narrow, and safer, more effective therapies are overdue. Some populations, such as women and Black Americans, have a higher likelihood of developing sarcoidosis due to genetic factors. Additionally, sarcoidosis can be triggered by environmental hazards: veterans, agricultural workers, and others with elevated exposure to environmental hazards tend to develop sarcoidosis at higher rates.
Despite these known risk factors, sarcoidosis research has been chronically underfunded for decades, forcing many interested researchers to focus elsewhere and stalling progress. Without a sustainable funding system and a continuous pipeline of researchers, it is challenging to develop new diagnostics and treatments.
To jumpstart the trajectory of sarcoidosis research and care, SPARC and ATF joined forces in 2020. Together, we engaged sarcoidosis researchers, health care providers, and people living with the condition to understand patients’ experiences and needs, identify barriers to progress, and determine how philanthropic funding can help overcome those barriers.
Based on our findings, we launched a grant program in 2021 to fund early-stage biomedical research in sarcoidosis, under the premise that advancing scientific knowledge about the disease was the necessary next step toward new, more specific diagnostic approaches and treatments. Each year for the past five years, ATF has awarded new grants to a new cohort of researchers and clinicians. The grant program actively nurtures this growing community of experts: We host annual convenings to discuss data, ideas, and roadblocks, and incentivize proposals for collaborative research projects that engage multiple research groups. The research projects funded to date collectively interrogate sarcoidosis from all angles, from investigating how genetics affect the risk of developing the disease to developing prognostic tools and identifying which proteins a potential drug should target. This is the largest sarcoidosis-focused grant program to date and has allowed promising questions to be answered. ATF has already accelerated progress in the field and is dedicated to being a consistent community partner.
Even as this grant program matured, supporting more research projects each year, ATF and SPARC continued to listen. After nearly five years of working with the sarcoidosis community, a promising possibility surfaced: a class of drugs called mTOR inhibitors.
In 2024, one of the researchers funded by ATF (for separate research) led a small study testing an mTOR inhibitor in people with sarcoidosis. The drug is already FDA-approved for other inflammatory conditions, so the researcher reasoned that it might also have an effect in sarcoidosis. In fact, several study participants saw their symptoms subside in their skin and lungs after treatment ended. ATF leaders saw an opportunity to accelerate the next step towards advancing this potential treatment for regular use in patients with sarcoidosis of the skin—a new study with more participants. For the newest grant program, ATF worked with SPARC and sarcoidosis experts to develop a new grant program to support such a study.
This new program, the Sarcoidosis Inhibitor of mTOR, was born from community input and excitement, fostered by philanthropic strategy and ambitious partnerships. This is the first time that ATF has supported a grant program that powers such an advanced stage of treatment development.
This exciting program aims to get life-changing treatments into the hands of some sarcoidosis patients within less than two years, paving the way for even more patients to have access to these medicines. SPARC’s work with ATF proves that strategic, patient-centered philanthropy can significantly improve, sometimes within a patient’s lifetime, the quality of life for those living with their condition.
