Our Impact

The Impact of the Jack McGovern Coats’ Disease Foundation

The mission of our organization is to raise awareness and galvanize attention towards Coats’ Disease, leading to us funding more researchers who are taking up projects to study this rare disease. With a small team, a dedicated board of directors, and a passionate network of volunteers and donors, we have been able to make incredible progress towards this goal in a short period of time.

Our work over the years

2006

  • First ever golf tournament fundraiser supports the West Coast Retina Foundation with friends, family, and colleagues coming together at Crystal Springs Golf Course. Funds raised go to support a study of Coats’.

2007

  • The Jack McGovern Coats’ Disease Foundation is founded. Friends and family pledge to volunteer and become board members.
  • First website is created (no other website on Coats’ exists).

2008

  • Dr. Mike Jumper signs on as our medical advisor.
  • The Foundation helps sponsor the first ever national Conference on Coats’ Disease in San Francisco. Dr. Weilan Ye of Genentech attends.
  • The Foundation provides the first academic grant to Dr. Michael Trese who is researching the origins of Coats’ Disease.
  • Golf tournament, fashion show, and a bowling event all raise money for the Foundation and the Foundation continues to operate with zero administrative costs.

2009

  • Doctor directory launches on website.
  • Part-time Social Media Director is hired. The website and Facebook page begin to reach hundreds of families throughout the country and world.
  • Jack McGovern Coats’ Disease Foundation joins the rare disease community with membership in NORD.

2010

  • The Foundation helps sponsor second Conference on Coats’ Disease in San Francisco.

2011

  • The Foundation and Dr. Mike Jumper’s efforts result in Genentech Corporation launching study into the genetics of Coats’ Disease. Funds raised by the Foundation provide support for the study to learn about the cause of Coats’.
  • Advisory board is named to work with patient family advocates around the country.

2012

  • Website and social media continue to expand the network of Coats’ patients and families worldwide.
  • Outreach efforts made to eye doctors throughout the country link Coats’ patients with the Foundation.

2013

  • Genentech study expands to seek blood samples from patients and families so that genetic mapping of the disease can take place. Four sites in the United States—San Francisco, Utah, Los Angeles and Tennessee—are selected to collect blood samples from Coats’ patients and their families. The Foundation helps fund the sites and the work done at them.
  • New website is launched.

2014

  • Genetic mapping and study of disease markers continues at Genentech. The Foundation helps publicize the need for blood samples from patients and families. Multiple samples are collected at the four national sites.

2015

  • State Senator Jerry Hill enacts legislation making August 17th as Coats’ Disease Day in the State of California.
  • The Foundation partners with Know the Glow Foundation which aims to educate schools, parents, and families about eye disease and the indicator of an irregular “glow” which is detected in a person’s eye in a photograph.
  • Genentech study continues.
  • Jeannee Parker Martin is elected the new President of the Foundation.

2016

  • Ten year anniversary of the Foundation.
  • Our digital presence reaches over 1,400 members on Facebook, and our website is visited by people from over 55 countries, worldwide.
  • Raised awareness through our own community and in partnership with Know-The-Glow to make people aware of warning signs of many preventable childhood diseases.

2017

  • Launched first ever Coats’ Disease Patient Registry; and posted new grant guidelines for researchers.
  • Supported the founding of a retinal disease tissue biobank at The Wilmer Eye Institute at Johns Hopkins University. These samples will be available to doctors and researchers for study – both within Johns Hopkins and from outside institutions. This collaboration is a direct result of our insistence that the research community needs to collaborate more and compete less.
  • Suzanne Levere is elected the new President of the Foundation.
  • Dr. Deborah Marron joins the Foundation as its first Executive Director.

2018

  • The Foundation donates funds to the Wilmer Eye Institute at Johns Hopkins to establish the Jack McGovern Coats’ Disease Foundation National Tissue Biobank to facilitate research that will lead to improving treatments and to finding a cure.
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