About Us

The Jack McGovern Coats’ Disease Foundation funds research to find a cure for Coats’ Disease and pediatric retinal Disease. The Foundation is the preeminent resource for Coats’ Disease patients and their families. 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. 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 ten, 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. 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.

Since the Foundation was formed, we have become the preeminent source for information and resources to help educate and support families in their fight against Coats’ Disease. Our web site provides a Directory of Retina Specialists who are knowledgable of Coats’ Disease and treatment options. The site also links patients and their families to a community of other Coats’ Disease patients.  We are the only organization that is totally focused on finding a cure for Coats’ Disease.

Funding Research

We have funded opportunities to create awareness and to facilitate research on Coats’ Disease.  We have provided grants to the San Francisco Retina Foundation to fund a conference of retinal specialists from around the globe to share best practices and the latest treatment options and studies; to Dr. Michael Trese for his ground-breaking research towards finding a cure; and to Genentech for a cutting edge project to map the DNA of Coats’ Disease.

We are very proud to announce a new initiative with the Wilmer Eye Institute at Johns Hopkins to establish the Jack McGovern National Tissue Biobank, funded by the Foundation, which will facilitate research into the causes of, and a cure for, Coats’ Disease.  Read our press release.

We continue to seek those researchers and clinicians who will apply for a foundation grant to further their work towards helping those with Coats’ Disease and seeking treatments and, ultimately, a cure for this potentially blinding disease. Apply for a Grant.

What is Coats’ Disease?

Coats’ Disease, or exudative retinitis or retinal telangiectasis, sometimes spelled Coates Disease, was first identified by Scottish ophthalmologist George Coats in 1908. It is a very rare condition where there is abnormal development in the blood vessels behind the retina. The blood rich retinal capillaries break open, leaking the serum portion of the blood into the back of eye. The leakage causes the retina to swell, and can cause partial or complete detachment of the retina. Coats’ disease is seen predominantly in males (69%) and symptoms generally appear in children aged six to eight but can develop as young as four months. It progresses gradually and affects central vision. It is almost always unilateral (affects only one eye). If caught early, some level of vision can typically be restored. If caught in late stages, complete loss of vision can occur. In its final stages, enucleation (removal of the affected eye) is a potential outcome.

Coats’ or Coats? (What’s the Deal with the Apostrophe?)

This disease was identified by Dr. Coats 110 years ago and became known as Coats’ Disease in his honor. Over the years, the apostrophe was sometimes not included in research documentation and that spelling became an accepted variation of the name. The Jack McGovern Coats’ Disease Foundation was established in 2006 and our articles of incorporation use the original spelling of the name with the apostrophe included. We follow the standard that continues to be accepted in the medical community and which is used by the American Academy of Ophthalmology and the American Association for Pediatric Ophthalmology and Strabismus. On our site you will see links to prior articles and research papers which may or may not include the apostrophe but we will continue to use “Coats’ Disease” as we move forward.

Our Mission

Our mission is to find a cure for Coats’ Disease through the latest cutting edge medical research. Our goal is to offer all children like Jack hope as they wage a lifelong battle against Coats’ Disease and blindness.

Our Goals are to Build Awareness; Raise Funds; Fund Research; Build a Patient Registry to make invaluable data available to researchers

Why and How We Fundraise

Coats’ Disease is a rare eye disorder that can cause blindness due to abnormal development of the blood vessels behind the retina. The disease primarily afflicts children as young as four months old but has also been diagnosed in adults; it is seen more often in boys.

The Jack McGovern Coats’ Disease Foundation was formed in 2006 by Tina and Ed McGovern in the name of their son, Jack, who was diagnosed with Coats’ Disease when he was ten. Despite partial loss of sight in one eye, Jack went on to be a successful student-athlete playing football and lacrosse in high school and lacrosse at the Division 1 collegiate level. He graduated from Holy Cross University in 2017.

The Jack McGovern Coats’ Disease Foundation is the preeminent source for information and resources to help educate and support families in their fight against Coats’ Disease. Your donation will be used to raise awareness, fund research, and foster a community of patients, parents, medical professionals, and supporters all with the common goal of curing Coats Disease.

We are pleased to announce that in January 2018, the Jack McGovern Coats’ Disease Foundation made a donation to establish the Jack McGovern National Tissue Biobank at the Wilmer Eye Institute, John Hopkins Medicine. 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.

We raise funds through a variety of initiatives. Our most successful and well known fundraising event is an annual golf tournament held in San Francisco, CA. We will be offering additional events to raise awareness and raise funds for research. Please check our event calendar for updates.

We also accept donations online, by check, or by contacting us directly. We encourage donors to set up a monthly donation schedule through our website.  Donate here. 

Scott’s Story

“My name is Scott Jerome McCrady and I was diagnosed with Coats’ disease when I was 5 years old and couldn’t pass my elementary school eye exam. My parents took me to an optometrist and then a retinal specialist in my home town. The retinal specialist suspected Coats’ disease and referred us to a specialist…”

Read more about Scott’s story…

 

To Donate:

Donations are accepted year round online, by check, or by contacting us directly.

The Foundation is a California Non-Profit Corporation and a recognized IRS 501(c)(3) charitable organization. All donations are tax deductible.

All donations are used to fund research to find a cure for Coats’ Disease. 

Board of Directors

We are deeply grateful to the JMCDF Board of Directors, who volunteer their time and expertise to advance the mission of the foundation.