Lurie Children’s Announces $11 Million Gift from Don and Anne Edwards to Establish the Edwards Family Division of Genetics and Rare Diseases

Ann & Robert H. Lurie Children’s Hospital of Chicago today announces a transformative $11 million gift from Don and Anne Edwards to establish and name the Edwards Family Division of Genetics and Rare Diseases. This investment positions Lurie Children’s as a national destination for pediatric genetics and a leader in rare disease innovation.

The announcement serves as a major catalyst to accelerate breakthroughs in diagnosis, treatment, and discovery for children with rare and genetic conditions.

“Families coping with rare diseases wait far too long for answers,” said Tom Shanley, MD, Lurie Children’s President & CEO. “This extraordinary investment from the Edwards family changes that trajectory. It strengthens our ability to improve diagnostics, expand treatment options, and bring renewed hope to children throughout Chicago, Illinois, and beyond.”

More than 25 million Americans are affected by rare diseases, yet over 40 percent remain undiagnosed, and 95 percent lack any current treatment options. In Illinois, there is currently only one geneticist per one million residents, creating significant barriers to timely care.

The Edwards Family Division of Genetics and Rare Diseases expands Lurie Children’s ability to meet these urgent needs. The Edwards’ gift supports efforts to:

• Establish the largest pediatric genetics training program in Illinois
• Bring diagnostic testing in-house to reduce wait times from more than three months to fewer than two weeks
• Triple the number of gene therapy and clinical research trials, reaching nearly 75 active trials by 2030

“Our division’s mission has always been to bring answers and hope to families navigating rare and genetic diseases,” said Carlos Prada, MD, Head of Edwards Family Division of Genetics and Rare Diseases. “Our team brings extraordinary dedication to every child we serve, working each day to shorten the long road to diagnosis and expand the best treatment options available. This remarkable gift fuels that mission and expands the impact we can have for children across our region and beyond.”

For Don and Anne Edwards, members of Lurie Children’s Medical Center and Founders’ Board and grateful parents, this commitment is deeply personal.  “Anne and I are incredibly proud to support this effort at Lurie. For a child to live life with illness, uncertainty and little hope is simply unacceptable. We believe Lurie Children’s is going to be the place that makes a difference for patients with genetic disorders—the place that can both figure out a diagnosis and actually have a therapy to treat rare disease,” said Don.

The gift highlights the critical importance of collaboration between philanthropy and state leadership. This gift marks a pivotal moment—one that opens the door for additional philanthropic investment to advance genetics and rare disease research. The more funding this program receives, the faster progress in the field will become reality.

“Every top children’s hospital must have a world-class genetics program,” said Dr. Shanley. “With the vision of the Edwards family and the support of future donors, we are building the leading hub for genetics care, training, and innovation.”

About Ann & Robert H. Lurie Children’s Hospital of Chicago

Ann & Robert H. Lurie Children’s Hospital of Chicago is a nonprofit organization committed to providing access to exceptional care for every child. It is the only independent, research-driven children’s hospital in Illinois and one of less than 35 nationally. This is where the top doctors go to train, practice pediatric medicine, teach, advocate, research, and stay up to date on the latest treatments. Exclusively focused on children, all Lurie Children’s resources are devoted to serving their needs. Research at Lurie Children’s is conducted through Stanley Manne Children’s Research Institute, which is focused on improving child health, transforming pediatric medicine and ensuring healthier futures through the relentless pursuit of knowledge. Lurie Children’s is the pediatric training ground for Northwestern University Feinberg School of Medicine. It is ranked as one of the nation’s top children’s hospitals by U.S. News & World Report.