On Coats’ Disease Awareness Day, foundation announces groundbreaking research effort to develop first validated animal model for the rare eye disease

Research led by Mass Eye & Ear and Harvard’s’ Dr Leo Kim could create a critical new tool for understanding Coats’ disease and developing future treatments
On Coats’ Disease Awareness Day, the Jack McGovern Coats’ Disease Foundation is announcing a groundbreaking research initiative that could fundamentally change the way scientists study Coats’ disease and pursue new treatments and ultimately a cure for the rare eye disease.
Led by Leo A. Kim MD PhD of Harvard Medical School and Massachusetts Eye and Ear, the research will investigate whether an existing genetic mouse model involving the IGFBP7 gene can be developed into the first validated animal model of Coats’ disease.
For a disease that primarily affects children and can cause progressive vision loss or blindness, one of the greatest obstacles to research has been the absence of a validated model that accurately reproduces the disease. Without such a model, researchers have been limited in their ability to fully understand how Coats’ disease develops, identify potential therapeutic targets, and evaluate promising treatments in a controlled research setting.
“Coats’ disease has been waiting for the right scientific tools,” said Sarah Kopac, executive director of the Jack McGovern Coats’ Disease Foundation. “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.”
A critical first step toward a cure
Coats’ disease is a rare retinal vascular disorder in which abnormal blood vessels develop in the retina and leak fluid, potentially causing retinal damage, detachment, and vision loss. While existing treatments can address some of the complications of the disease, there is currently no cure, and researchers still do not fully understand what causes the disease or drives its progression.
The rarity of Coats’ disease, estimated at approximately 0.07 to 0.1 cases per 100,000 people, has made traditional research particularly challenging.
Dr Kim’s research aims to change that.
By studying the IGFBP7 genetic mouse model, researchers will work to determine whether it can reproduce key characteristics of Coats’ disease. The project will incorporate advanced retinal imaging, tissue analysis and machine-learning approaches to characterize disease changes and identify subtle vascular abnormalities.
If successful, the model could become an essential platform for:
· Investigating the underlying biology of Coats’ disease
· Identifying new therapeutic targets
· Testing potential treatments
· Exploring future gene- and RNA-based therapies
· Generating preliminary data for larger federal research grants
· Accelerating the development of better treatment options for patients
A family’s promise becomes a new research opportunity
The announcement carries particular significance for Tina and Ed McGovern, who 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.
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 help bring this research opportunity to life. The Foundation is now inviting individuals, families, corporations and members of the medical and research communities to join this effort.
“The first breakthrough doesn’t necessarily begin with a treatment. Sometimes it begins with creating the tool that makes the treatment possible,” said Kopac. “This research has the potential to give scientists something they have never had before – a way to study Coats’ disease in a laboratory model that could help unlock new answers.”
Every breakthrough starts with a first step
The Foundation believes that developing a validated disease model could represent far more than the completion of a single research project. It could establish a new scientific foundation for Coats’ disease research, position researchers to pursue larger federal and corporate grants, and accelerate future discoveries.
“This is a pivotal moment for Coats’ disease research,” according to Kopac. “Developing a validated model would allow researchers to investigate the disease in ways that simply have not been possible before and could ultimately help us identify new strategies to preserve vision.”
The Foundation is encouraging the Coats’ disease community and supporters of rare disease research to learn more about the project and consider making a gift to the Weiss Family and Jack McGovern Coats’ Disease Research Fund. Learn more and support the research: https://www.coatsdiseasefoundation.org/crackingthecode
About the Jack McGovern Coats’ Disease Foundation
The Jack McGovern Coats’ Disease Foundation is the world’s only non-profit organisation solely dedicated to finding a cure for Coats’ disease. Since 2006, the Foundation has funded innovative research, supported physician education, connected patients and families worldwide, and raised awareness of this rare retinal disease. Through collaboration, education, and advocacy, the Foundation is working to ensure that every person affected by Coats’ disease has access to the resources, support, and hope they deserve.
Media Contact
Sarah J. Kopac
Executive Director ,Jack McGovern Coats’ Disease Foundation
skopac@curecoats.org
www.coatsdiseasefoundation.org