Hope Plaza and the Legacy of Ellen S. Clark

Ellen, my childhood sweetheart and wife of 25 years, passed away in 2010 from the ultra-rare genetic disorder RVCL.

Since Ellen’s diagnosis in 2005, my family and I have dedicated ourselves to science, research, the genetic revolution, and, ultimately, finding cures. Rare diseases collectively impact more than 400 million people around the world. Behind that number are families searching for answers, treatments, and hope. We were one of those families.

I can’t think of a better way to honor Ellen than to keep pushing for advances in rare disease research. What began as something deeply personal to our family has grown into a mission that is near and dear to my heart and to so many people at The Clayco Foundation and beyond.

There is no better legacy to leave than one of hope.

The Ellen S. Clark Hope Plaza at Washington University Medical Center was created with that idea at its heart. Maya Lin and Ellen worked together to create a place that would give a sense of tranquil hope to people who may be visiting during some of the most difficult moments of their lives. Maya’s incredible ability to bring nature and architecture together never ceased to amaze Ellen, which made having her as part of this project especially meaningful. LJC worked closely with Maya on the landscape architecture, helping bring their shared vision for the plaza to life.

The design incorporates a harmonious blend of nature with a serene infinity fountain at its center, a place to encourage reflection and provide respite in moments of both grief and joy. The plaza’s trees, grasses, and wildflowers were specifically selected in collaboration with the Missouri Botanical Garden based on what is present in a self-sustaining Missouri woodland habitat. It was intentionally created as a living landscape, one that continues to grow, change, and develop over time.

There is something fitting about that.

Hope isn’t static. Neither is Ellen’s legacy.

And there is one detail that makes the plaza especially personal. At night, fiber-optic lights around the fountain twinkle like stars in the night sky. Their pattern matches the constellation in the sky on Christmas Day in 1959, the day Ellen was born.

I love that detail. Maya thoughtfully considered every part of this project, creating a place where people facing difficult medical situations could be transported, even for a few moments, to somewhere beautiful and find a sense of comfort, peace, and hope.

Ellen left a giant legacy and was able to see this beautiful plaza come to completion during her lifetime. I will always be grateful for that.

We create the deepest connections to projects that intertwine with our personal lives. They leave an unforgettable impression on us. Hope Plaza certainly has on me.

Today, Ellen’s name lives in a place that is alive itself. It grows and changes with the seasons. Her stars come out each night. And every day, patients, families, doctors, and researchers pass through a place created to remind them that even in the hardest moments, there is hope.

Ellen’s light shines in other ways, too. Each October, The Clayco Foundation hosts Illumination, our Chicago party for a cure supporting RVCL research. What began nine years ago as our son Shawn’s tribute to his mother, turning grief into purpose, has grown into one of Chicago’s most inspiring philanthropic traditions, uniting art, light, and community in her memory. Since 2016, Illumination has helped raise more than $14 million for RVCL research, funding the same search for answers and cures that Hope Plaza was built to represent. Join us this year on October 24^th for our 10^th anniversary.

I wish Ellen were here to see how far the science has come and how many people continue to carry this mission forward. We still have a long way to go.

But that is what hope is about.

You keep going.