Letter from our Founder: A Look Into The Future

It is with pride and renewed energy to find the cure for Coats Disease that I write to my fellow patient families, donors, and friends of JMCDF. Thank you for taking time to read on.

Did you know that a majority of Americans fear losing their eyesight more than any of their other senses? As patient families, those who are patients and those of us who love them, we know this better than anyone. With the diagnosis of Coats Disease, every day we wake with an urgency to know how we can help, find the best treatment and understand what causes this baffling, blinding disease in the first place.

Our goal is simple. No one should have to hear this diagnosis in the first place.The Jack McGovern Coats’ Disease Foundation (JMCDF) is dedicated to funding the cutting edge research needed to cure Coats’ Disease. Ten years ago, a board of volunteers came together to bring a focus to Coats’ Disease. There was no one out there. The National Institute of Health, The National Eye Institute, no one.

That laser focus has enabled nearly 1 million dollars in funds to be raised funds that have directly launched and supported:

  • Two international conferences where doctors come together to share the latest research into Coats Disease
  • Genentech’s study on the cause of Coats’ Disease which continues today
  • Development of an expert medical advisory board and patient resource directory families can count on for care
  • The JMCDF website is the ‘go to’ source for the Coats’ Disease patient community sharing knowledge and emotional support with 3,000 daily visits from the US and countries around the globe, 1200 Facebook members, #1 on Google for Coats’ Disease FAQs and connecting patient families to the most knowledgeable doctors to help advise on care

Our future is clear.

  1. We are prepared to launch of the first of its kind comprehensive patient registry critical for clinical trials
  2. We will fund two new research studies vetted by the best team of experts from ophthalmology to biotech
  3. We have reached out to patient advocates from around the country and internationally to help us maximize efforts on fundraising and research program identification.

However, the metrics only tell part of the story of why JMCDF exists. Here is just one of many patient stories that makes the case for the important work we do each day. Natalie, a parent with a child who is battling Coats’ Disease, says: “Thanks to the Coats’ Disease foundation’s physician directory, my son was seen and treated for his coats disease by Dr. Toth at Duke university 6 days after diagnosis and his vision went from 20/100 to 20/30 in his affected eye. I 100% believe your work…helped to save my sons sight! My son turned 11 this year, he was 10 when diagnosed with Coats’ Disease was 1 when you started your foundation. As a mom I am so glad you started this foundation!”

On behalf of the board, and Jack McGovern, now a thriving 22 year old college senior, I am proud to be a part of the solution. Working with you, our fellow patient families, through tears and joy, we have done much. But we can do so much more together. As we look in the rear view mirror and ahead at the year end, please consider JMCDF in your giving plans.

By donating any amount towards this foundation in which 98% of all funds go directly to the research we are doing and want to do in the future we can move mountains. We know that with the more funds we raise, the more research we can fund, and accelerate the pace of that research. Instead of offering a small grant to say “we care” we can offer a researcher the full amount to ensure his/her research project is fully funded and faster outcomes mean answers. Let’s achieve great things. Let’s put our money behind our dream, Let’s cure Coats’. Thank you for inspiring us each day. I look forward to a meaningful year ahead.

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