1 in 10: The endometriosis challenge

What’s taking shape in Connecticut is more than a research initiative. It’s a model for how states can take on complex, underfunded diseases in a coordinated, impactful way.

Already, five other states have reached out to learn how EndoRISE has accomplished this feat.

As Connecticut state Rep. Jillian Gilchrest, D-West Hartford, notes, each of those states has the right ingredients: a legislative body, a flagship university, and research institutions. EndoRISE is the first program to bring them all together in a unified model.

“Connecticut is looked at nationally as a leader in the endometriosis research space,” said Gilchrest. At the center of this effort is JAX.

Affecting an estimated 1 in 10 female-born individuals worldwide, endometriosis is a chronic, systemic condition in which tissue similar to the uterine lining grows outside the uterus, causing inflammation, scarring, severe pain, and sometimes infertility. Despite its prevalence, it remains widely misunderstood and underdiagnosed.

Ashley Fogarty, whose experience started at a young age, has endured years of chronic pain, misguided advice from doctors, as well as social and professional impact.

At JAX, scientists are working to change that trajectory.

Elise Courtois, assistant professor and director of the Single Cell Biology Lab, leads a team focused on uncovering the fundamental biology of the disease, including why lesions form and spread, what drives recurrence, and how pain develops at the cellular level. Using advanced tools such as 3D tissue models, single-cell sequencing, and spatial ‘omics, her team is mapping the cellular ecosystems within endometriosis lesions. A key area of focus is the interaction between immune cells and pain-sensing nerve cells. This work is helping validate patients’ experiences and pointing toward more targeted therapeutic strategies.

“Endometriosis affects millions of people, yet we still don’t fully understand what drives it,” Courtois said. “We don’t have reliable ways to detect it early, we don’t have treatments that stop the disease, and there is no cure.”

By combining endometriosis research with coordinated statewide infrastructure, education and public awareness, EndoRISE is accelerating progress in ways that would not be possible through isolated efforts alone.

“It’s a time for a quantum leap in endometriosis, not more incremental change,” said Ashley Abel, a geneticist who co-founded Metri Bio, which recreates human tissues in the lab to use for the development of treatments for endometrial disease. 

And increasingly, it is doing something more: demonstrating a scalable blueprint. One that shows how multiple institutions and state partners can come together with JAX at the center to enable science, empower collaboration, and move an entire field forward.

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