About the Foundation
Our Vision is to find a cure for Coats’ Disease.
Our Mission is to raise funds to support research, raise awareness, expand patient resources, and offer all Coats’ Disease patients hope and improvements as they wage a lifelong battle against Coats’ Disease and blindness.
Our Goals are to Raise Funds; Build Awareness; Fund Research; and Build Patient Resources.
The Jack McGovern Coats’ Disease Foundation funds research to find a cure for Coats’ Disease and pediatric retinal disorders. Since the Foundation was formed in 2006, we have become the preeminent source for information and resources to help educate and support families in their fight against Coats’ Disease. We serve as a hub for the Coats’ Disease community who seek information about specialists who treat this rare disease and updates on the latest research in this disorder and are the only organization that is totally focused on finding a cure for Coats’ Disease.
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The Jack McGovern Coats’ Disease Foundation is a 501 (c) (3) non-profit charitable Foundation that was established in 2006 by the parents of Jack McGovern as a promise to their son that they would never rest until there was a cure for Coats’ Disease.
At the age of 10, Jack McGovern discovered that he could no longer see the big E on the eye chart. Jack was seen by knowledgeable retina specialists and was diagnosed with Coats’ Disease, a rare disease that can cause blindness. This disorder causes leaking of the blood vessels behind the retina and has been diagnosed in children as young as four months old. It afflicts boys more often than girls but has also been diagnosed in adults.
For Jack, treatments for this rare eye disorder included four surgeries on his eye. The surgeries stopped the blood vessels from leaking but left Jack with a blind spot in the center of his left eye’s visual field. Jack is now an adult who despite his vision loss is looking forward to a bright future. He is a graduate of the College of the Holy Cross where he earned numerous awards as a student-athlete, playing all four years of college lacrosse at the Division 1 level. While a student, he was featured on CBS Sports. More recently, Jack was featured in an article in US Lacrosse Magazine. As with all Coats’ Disease patients, Jack will need to monitor the progression of his disease for his entire lifetime.
Jack was fortunate to be quickly diagnosed by physicians and specialists who had the knowledge and skills to provide treatment in his hometown. Because Coats’ Disease is a rarely seen orphan disease, many doctors are not familiar with this disease nor how to treat it. Due to lack of awareness of this rare disorder, many children have their affected eyes removed when doctors misdiagnose Coats’ Disease as cancer, which it is not.
To help Jack and other Coats’ children and their families, the Jack McGovern Coats’ Disease Foundation was established by Ed and Tina McGovern to raise awareness of Coats’ Disease and to raise funds to encourage and support research to find a cure for Coats’ Disease. Donate here.
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We have funded opportunities to create awareness and to facilitate research on Coats’ Disease. Since its inception, our Foundation has provided grants in support of research to a number of organizations and researchers including the San Francisco Retina Foundation to fund a conference of retinal specialists; Dr. Michael Trese for his ground-breaking research on Coats’ Disease; and to Genentech for a cutting-edge project to map the DNA of Coats’ disease.
Today, we seek those researchers and clinicians who will apply for a Foundation grant to further their work on Coats’ disease to develop treatments and, ultimately, a cure for this potentially blinding disease. Apply for a Grant.
In January 2019, we announced the creation of Education Grants to support junior fellows to travel and registration to in-person conferences or registration fees to attend virtual conferences. By sponsoring new professionals to attend retina meetings, we hope to raise awareness about the Jack McGovern Coats’ Disease Foundation and to encourage research into this disease.
Conferences include:
Association for Research in Vision and Ophthalmology (ARVO)
Advances in Pediatric Retina (APR)
Retina Society Meeting
American Academy of Ophthalmology (AAO)
American Society of Retina Specialists (ASRS)
American Association for Pediatric Ophthalmology & Strabismus (AAPOS)
The Retina Society
Video Library
At the Jack McGovern Coats' Disease Foundation, we are committed to providing comprehensive support and resources for Coats' patients and their families. One of the invaluable resources we offer is our video library, with content specifically curated for Coats' disease. From educational videos explaining the condition and treatment options to personal stories of triumph and resilience, our video library serves as a source of inspiration, knowledge, and support.
FAQ
At the Jack McGovern Coats’ Disease Foundation, we are often contacted by anxious parents or patients who are seeking information after receiving a diagnosis of Coats’ Disease. The questions below are provided as a resource to assist you as you and your doctor decide the best approach for treatment. These questions do not constitute any form of medical advice or diagnosis. Each patient is unique. An experienced retinal specialist who has examined the patient is the best source of information for diagnosis and treatment. We always recommend getting a second opinion.
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Ahead of any treatments or procedures, it is important to ask yourself and the doctor the following questions:
How do you know that this is Coats’ Disease?
Has your doctor treated other patients with Coats’ Disease?
Have you sought a second opinion? If not, please consult our Doctor Directory for knowledgeable doctors in your area.
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What Stage of Coats’ Disease is he/she in?
Will his/her vision get worse over time?
Will the eye have pain?
Will his/her eye start to turn out? Is muscle corrective surgery an option?
Are cataracts likely?
How likely is glaucoma? (due to retinal detachment)
Is there calcification?
What is the anticipated disease progression?
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Is there a thorough vision exam available?
Where is the vision affected? (central/peripheral/distance)
Does he/she have depth perception? (3D visibility)
What about the non-Coats’ eye?
To what extent is his/her vision affected?
Will we be able to use this as a baseline to measure progress/decline?
