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News|Articles|August 17, 2026

Jack McGovern Coats’ Foundation launches effort to develop first validated animal model for Coats' Disease

Key Takeaways

  • The Jack McGovern Coats' Disease Foundation announced the initiation of new research to develop the first validated animal model of Coats' Disease.
  • Coats' Disease is a rare eye disorder that primarily affects children.
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The Jack McGovern Coats' Disease Foundation has announced the initiation of new research to develop the first validated animal model of Coats' Disease, a rare eye disorder that primarily affects children.

The Jack McGovern Coats' Disease Foundation issued a press release announcing the initiation of new research to develop the first validated animal model of Coats' Disease, a rare eye disorder that primarily affects children. August 17 is designated as Coats' Disease Awareness Day.

Leo A. Kim, MD, PhD, will lead the research to determine if an existing genetic mouse model involving the IGFBP7 gene can be developed into a validated model of Coats’ Disease. He is from Harvard Medical School and Massachusetts Eye and Ear in Boston.

According to the press release, researchers will use advanced retinal imaging, tissue analysis and machine-learning approaches to characterize disease changes and identify subtle vascular abnormalities.

What is known about Coats’ Disease

Coats' Disease, for which there is no cure, is a rare retinal vascular disorder in which abnormal blood vessels develop in the retina and leak fluid, potentially causing retinal damage, detachment, and visual loss. The disease affects about 0.07 to 0.1 individuals per 100,000 people. Current treatments can address some complications, but the causes of the disease and what drives its progression remain to be determined.

The lack of a validated animal model that reproduces the disease is the major sticking point in the research. Without that model, researchers are limited in their ability to fully understand how Coats’ Disease develops, identify potential therapeutic targets, and evaluate promising treatments in a controlled research setting.

Sarah Kopac, Executive Director of the Jack McGovern Coats' Disease Foundation, commented, "Coats' Disease has been waiting for the right scientific tools. This research gives us an opportunity to build one of those tools from the ground up. A successful model could open doors that have remained closed to Coats' Disease researchers for decades."

Potential model outcomes

If successful, the model could serve as a platform for investigating the disease's underlying biology, identifying new therapeutic targets, testing potential treatments, exploring future gene- and RNA-based therapies, generating preliminary data for larger federal research grants, and accelerating development of better treatment options.

Kopac continued, “The first breakthrough doesn't necessarily begin with a treatment. Sometimes it begins with creating the tool that makes the treatment possible. This research has the potential to give scientists something they have never had before, ie, a way to study Coats' Disease in a laboratory model that could help unlock new answers."

The Foundation is supporting the research through the Weiss Family and Jack McGovern Coats' Disease Research Fund. The Weiss Family has made a $40,000 leadership gift to launch the initiative, and the Foundation is now inviting individuals, families, corporations and members of the medical and research communities to contribute.

Tina and Ed McGovern founded the Jack McGovern Coats’ Disease Foundation in 2006 after their son, Jack, was diagnosed with Coats’ Disease. Nearly two decades later, their commitment remains the same: to never stop pursuing a cure for Coats’ Disease.

More information on the research initiative is available at https://www.coatsdiseasefoundation.org/crackingthecode.


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