RELEASE: Gottheimer Launches Bipartisan Sarcoidosis Caucus to Battle the Debilitating Disease in Memory of His Mother

Above: Gottheimer with his mother Gwenn, who passed from Sarcoidosis.

WASHINGTON, D.C. — Today, February 23, 2026, U.S. Congressman Josh Gottheimer (NJ-5) announced the creation of the bipartisan Congressional Sarcoidosis Caucus, a new coalition dedicated to raising awareness, supporting patients, and advancing innovative research and development to treat Sarcoidosis, a debilitating, chronic, and sometimes fatal inflammatory disease that currently has no cure.

Gottheimer is launching the caucus after losing his mother Gwenn to Sarcoidosis in 2018. Gottheimer has led multiple appropriations funding requests since 2019 with the goal of expanding funding, research, and development for Sarcoidosis treatments through the National Institutes of Health.

Though small in stature, Gwenn was a big presence, and made a giant impact on the lives of her family and friends. Originally from the Jersey Shore, Gwenn dedicated her life to teaching, building her family, and nurturing her deep network of friends. She lit up the room with her vivaciousness and sense of humor. Her laugh was loud and her smile was large, even in the face of illness. Gwenn was just 71 when she passed.

“Sarcoidosis is a devastating disease that too often goes undiagnosed and under-researched,” said Congressman Josh Gottheimer (NJ-5). “After losing my incredible mom to this illness, I know how urgent it is that we do more to support patients, families, and researchers working toward better treatments and, ultimately, a cure.”

“I am honored to join the bipartisan Congressional Sarcoidosis Caucus to help shine a light on this devastating rare disease. Too many Americans and their families face the uncertainty and hardship that come with Sarcoidosis, and far too few treatment options exist today. By working together, we can raise awareness, advance critical research, and pursue policies that give hope to patients and move us closer to finding a cure,” said Congressman Max Miller (OH-6).

“We applaud Congressman Josh Gottheimer for his leadership in launching the bipartisan Congressional Sarcoidosis Caucus. This initiative is a critical step forward for patients and families impacted by sarcoidosis, bringing much-needed attention, research, and hope to a disease that has too often been underdiagnosed or misdiagnosed and overlooked,” said the Life and Breath Foundation.

“Thank you to Congressman Gottheimer and Congressman Miller for their leadership in establishing a sarcoidosis caucus,” said Mary McGowan, President and CEO, Foundation for Sarcoidosis Research (FSR). “This caucus is an exciting effort in building legislative pathways to improve access to care, advance research, and improve the lives of the nearly 200,000 individuals in the US impacted by sarcoidosis.”

Sarcoidosis most commonly affects the lungs and lymph nodes and can cause symptoms including coughing, shortness of breath, chest pain, and severe fatigue. In some cases, the disease leads to rapid organ deterioration and death. 

An estimated 150,000 to 200,000 Americans currently live with Sarcoidosis, with approximately 27,000 new cases diagnosed each year. While some patients can manage symptoms with existing medications, many forms of the disease do not respond to available treatments, underscoring the need for increased federal research and the development of new “orphan” drugs.

The new bipartisan Sarcoidosis Caucus will work with the FDA to improve its outdated system and spread awareness about the importance of additional dedicated federal resources to fighting this disease.    

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