The Impact of the Jack McGovern Coats’ Disease Foundation
The intention 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
- Renewed our research partnership with Genentech to explore a genetic connection to Coats’ Disease.
- Partnered with the Macula Society to develop a research grant specific to Coats’ Disease to spur research to discover improved treatments and find a cure.
- Stewarded a team of parents and patients who are raising awareness and funds in their communities and are connecting with newly diagnosed patients and their families.
- Promoted the Patient Registry, an anonymous collection of data from Coats’ Disease patients available to researchers. In 2021, we increased the number of registered patients by 35%.
- Expanded the Doctor Directory to now include more than 100 physicians from 30 countries who have experience treating Coats’ Disease.
- Increased the Patient & Family Contact Directory by 44%. The Directory provides a way for Coats’ patients and their families to connect with others directly.
- To promote early diagnosis, we raised awareness of Coats’ Disease among pediatricians by partnering with KnowTheGlow® as an exhibitor at the American Academy of Pediatrics (AAP) Conference.
- Sponsored sessions on Coats’ Disease during the 2021 Advances in Pediatric Retina (APR) Course, attended by retina specialists around the world.
- Hosted the 15th Annual Golf Tournament, where we welcomed long-term and new supporters for our biggest fundraiser of the year. We increased our sponsorship support by nearly 40% over the previous year.
- The 2021 Cure Coats’ 5K and Awards Ceremonies were both in-person and virtual, building on the success of previous years.
- Developed new patient resources, including a Patient & Expert Video Library, an updated brochure, and a Press Kit to enable people to easily share information about Coats’ Disease in their local communities.
- Continued to 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!
- 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.
- 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.
- 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.
- Expanded our Patient Registry to 243 patients.
- Expanded our Doctor Directory to 86 physicians in 12 countries.
- Awarded 8 Travel Grants to junior researchers and clinicians to attend the Advances in Pediatric Retina Course 2019 (APR).
- Sponsored a Welcome Reception at the 2019 APR.
- Sponsored Dr. Michael Jumper as the Jack McGovern Coats’ Disease Foundation Keynote Speaker at the 2019 APR.
- Elected Ed McGovern as our new President of the Board.
- Held the 13th Annual Golf Tournament and Dinner.
- Held the 2nd Annual Cure Coats’ 5K/1K Run.
- Held the 1st Annual Cure Coats’ 5K/1K Virtual Run.
- Hosted an evening reception for attendees of the 2019 American Academy of Ophthalmology Annual Meeting in San Francisco.
- Increased outreach to patients and families through social media and a monthly newsletter.
- Established a patient registry for researchers to access.
- Appointed a Scientific Advisory Board.
- Held the inaugural Cure Coats’ Run.
- The Foundation launches the first ever Coats’ Disease Patient Registry and posts new grant guidelines for researchers.
- Suzanne C. Levere, M.Ed. is elected the new President.
- The first Executive Director, Deborah J. Marron, Ed. D. joins the Foundation to enhance outreach and fundraising for research.
- We celebrate the Foundation‘s 10th anniversary with the most successful Annual Golf Tournament and Dinner Fundraiser to date.
- The Foundation hosts an event for doctors and researchers attending the annual meeting of the American Society of Retina Specialists (ASRS).
- 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, RN, MPH, is elected the new President of the Foundation.
- 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.
- 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.
- 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.
- The Jack McGovern Coats’ Disease Foundation and Dr. Mike Jumper’s efforts result in Genentech Corporation launching a study into the genetics of Coats’ Disease.
- Funds raised by the Foundation provide support for the study to learn about the cause of Coats’.
- An advisory board is named to work with patient family advocates around the country.
- The Foundation helps sponsor the second Conference on Coats’ Disease in San Francisco.
- 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 around the world.
- The Jack McGovern Coats’ Disease Foundation joins the rare disease community with membership in NORD.
- Dr. Mike Jumper signs on as our medical advisor. The Jack McGovern Coats’ Disease Foundation helps sponsor the first ever national Conference on Coats’ Disease in San Francisco. Dr. Weilen Lee 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 organization continues to operate with zero administrative costs.
- Friends and family pledge to volunteer and become board members.
- The Foundation launches the first website dedicated to Coats‘ Disease.
- 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’ Disease.
- The Jack McGovern Coats’ Disease Foundation is founded.