A Status Update and Resources for the Coats’ Community




Dear Coats’ Patients, Parents, and Friends,

The past month has certainly been an unsettling and stressful time! We at the Jack McGovern Coats’ Disease Foundation want to check in with you and assure you that we are well-positioned to carry on our work to find a cure for Coats’ Disease patients around the world. With the ever-evolving developments of the COVID-19 virus pandemic impacting how many of us are going about our daily lives, we are fortunate to operate without bricks and mortar. Our two part-time staff and dedicated Board of Directors continue to work and meet virtually to ensure that the Foundation’s work continues without disruption.



  • Our Scientific Advisory Board continues to advise us during this uncertain time. They encourage Coats’ patients and parents to continue consulting with their treating retinal specialists in order to determine appropriate next steps, the timing of treatments, and follow-up care for their specific case. Each patient is unique! The good news is, at this time, the medical community is not aware of any extra risk COVID-19 poses to Coats’ patients, as it may for patients who have other diseases.
  • In the midst of rapidly developing updates about COVID-19, we are hearing from patients and parents about acts of selflessness, kindness, and resilience among the Coats’ community. We will be sure to share those stories with you.
  • We are committed to continuing our work to raise funds to support research, raise awareness, and expand patient resources to offer all Coats’ Disease patients hope and improvements as they wage a lifelong battle against Coats’ Disease and blindness. We are very grateful to new supporters who are donating for the first time and for our stalwart, longstanding supporters who continue to motivate and encourage us to fight this good fight. If you are able to support the Foundation in our efforts, we would appreciate your generosity.



  • Additionally, the Foundation is a member of NORD – National Organization for Rare Disorders. NORD is offering a free webinar for rare disease patients and caregivers: A Rare Response: Addressing the COVID-19 Pandemic next Tuesday, March 31. Click here for more information and to register.


We wish you, your loved ones, and the entire Coats’ community robust health during this difficult time. We are in this together and are here to support you!


Jack McGovern Coats’ Disease Foundation

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