The Foundation marks two decades of advancing research, supporting families, and raising global awareness of Coats’ disease with a week of celebration in the San Francisco Bay Area

The Jack McGovern Coats’ Disease Foundation proudly celebrates its 20th Anniversary, marking two decades of unwavering commitment to improving the lives of individuals affected by Coats’ disease through groundbreaking research, education, patient support, and global awareness.

Founded in 2006 by Ed and Tina McGovern following their son Jack’s diagnosis with the rare retinal disease, the Foundation has grown from a grassroots family initiative into the world’s only non-profit organization solely dedicated to finding a cure for Coats’ disease. Today, the Foundation has become the preeminent source for connecting patients, families, physicians, and researchers across the globe.

“For twenty years, our community has shown what’s possible when families, physicians, researchers, and supporters unite behind a common purpose. Every breakthrough, every family connection, every newly educated doctor, and every dollar invested in research brings us one step closer to a future where no child or adult loses vision to Coats’ Disease.” – Sarah Kopac, Executive Director of the Jack McGovern Coats’ Disease Foundation.

Over the past two decades, the Jack McGovern Coats’ Disease Foundation has achieved significant milestones that have transformed the landscape for Coats’ disease research and patient care, including:

• Funding ground breaking research and awarding research grants to advance scientific discovery
• Awarding Education Grants to build the next generation of retina specialists focused on Coats’ disease
• Building an International Coats’ Disease Patient Registry with nearly 500 patients representing 49 countries, providing researchers with the ONLY specific Coats’ disease data resource in the world
• Developing an International Doctor Directory featuring 130 retina specialists across more than 20 countries, helping families locate experienced care
• Connecting hundreds of families in over 40 countries through peer-to-peer support programs
• Establishing long-standing partnerships with leading institutions including Stanford University, Mass Eye and Ear, Duke University, UC Davis, Genentech, Johns Hopkins Medicine, and the Macula Society
• Hosting awareness, education, and fundraising events while creating hundreds of educational resources for patients, families, and healthcare providers

The Foundation’s impact extends far beyond research funding. Today, families diagnosed with Coats’ disease have access to educational resources, physician referrals, patient connections, virtual support groups, and a global community dedicated to ensuring that no one faces the diagnosis alone.

Celebrating 20 Years of Impact To commemorate this milestone, the Foundation will host a week of special events throughout the San Francisco Bay Area from August 23–28, 2026, bringing together patients, families, physicians, researchers, donors, volunteers, and supporters to celebrate the progress made over the past twenty years while looking toward the future.

Celebration week events include:

• Sunday, August 23 – Topgolf Fundraiser at Topgolf Burlingame
• Thursday, August 27 – 20th Annual Jack McGovern Coats’ Disease Foundation Golf
  Tournament at Crystal Springs Golf Course
• Friday, August 28 – 20th Anniversary Gala at the historic City Club of San Francisco
  Throughout the week, attendees will celebrate the remarkable journey of the Foundation,
  honour the patients, families, and physicians, and supporters who have shaped its mission,
  recognise our achievements, and help raise critical funds to accelerate the path to a cure.

“While we are proud of how far we’ve come, our work is not finished,” Kopac added. “As we celebrate twenty years, we remain focused on the future – expanding research, strengthening our patient community, promoting earlier diagnosis, and ultimately finding a cure.”

Advocates, community members, healthcare professionals, corporate partners, and supporters are invited to join the celebrations and learn more about how they can help advance the Foundation’s mission. For more information or to make a donation, visit
www.coatsdiseasefoundation.org.

About the Jack McGovern Coats’ Disease Foundation

The Jack McGovern Coats’ Disease Foundation is the world’s only non-profit organisation solely dedicated to finding a cure for Coats’ disease. Since 2006, the Foundation has funded innovative research, supported physician education, connected patients and families worldwide, and raised awareness of this rare retinal disease. Through collaboration, education, and advocacy, the Foundation is working to ensure that every person affected by Coats’ disease has access to the resources, support, and hope they deserve.

Media Contact

Sarah J. Kopac

Executive Director ,Jack McGovern Coats’ Disease Foundation

skopac@curecoats.org

www.coatsdiseasefoundation.org

---