Board Chair’s Letter To The Coats’ Community

Dear Friends,

It is my great pleasure to serve as the President of the Jack McGovern Coats’ Disease Foundation. As we move into our 15th year, I am excited to share with you our most recent accomplishments. Without you, we couldn’t continue our work to promote research to preserve a child’s vision, raise awareness, and provide resources for patients. We are the only organization that is focused solely on Coats’ Disease.

Your support in 2020 has enabled us to move forward on many fronts:

~ We support research through the Coats’ Disease Patient Registry, the international patient database for researchers to access. We now have data for patients from 30 countries in the patient registry!

~ We awarded Researcher Grants for junior Fellows to attend the virtual conference of the American Academy of Ophthalmology so they could learn more about cutting-edge research and treatments for Coats’ Disease. By supporting these researchers, we are creating a cadre of motivated scientists who are now focusing on Coats’ Disease.

~ We established a team of parents and patients across the country who are raising awareness and funds in their communities and supporting other newly diagnosed patients and their families. At their suggestion, we now send information packets to new patients and parents and created a private contact directory for parents and patients to connect with each other directly.

~ We continue to expand patient resources such as the Doctor Directory which now contains over 100 doctors from 12 countries. It is the only resource that is dedicated to helping patients and their families locate qualified retina specialists around the world who treat Coats’ Disease.

Coats’ Disease is a rare and complicated disease; it is not hereditary, and the cause is not known. Two thirds of patients are children. The Jack McGovern Coats’ Disease Foundation is the only foundation with the goals of raising awareness and funding research in this arena. We remain focused on supporting ongoing research and on encouraging new research that leads to a better understanding of Coats’ Disease.

It is because of the generous support of people like you, that we have achieved what we have and are able to offer hope and resources to so many who wait for a cure for themselves or a loved one.  As we move forward in 2021, we will expand our efforts across the country and around the world, we will engage the Coats’ Community in our activities,  encourage more researchers to examine Coats’ Disease, involve volunteers in raising awareness of Coats’ Disease, and offer more opportunities to raise funds for research.

Thank you very much for your support!



Ed McGovern, Co-Founder and President
Jack McGovern Coats’ Disease Foundation