Couple Donates $11 Million to Enhance Genetic Research at Lurie

A couple with strong connections to Chicago has pledged a generous donation of $11 million to Lurie Children’s Hospital. This significant gift aims to accelerate research, treatment, and diagnosis for children suffering from rare and genetic disorders. The donation, made by Don and Anne Edwards, will specifically support the newly named Edwards Family Division of Genetics and Rare Diseases.

Don Edwards, founder and executive chairman of Flexpoint Ford, a private equity investment firm, has personal experience with genetic disorders. He serves on the board of trustees at Lurie and has previously chaired the University of Illinois board of trustees. Anne Edwards is also active in the hospital’s initiatives through her role on Lurie’s Founders’ Board. Together, they have three grown children, and their commitment to this cause stems from a deep understanding of the impact that genetic diagnosis and treatment can have on families.

The donation will primarily focus on expanding the training of pediatric geneticists, addressing a significant shortage in Illinois, where there is approximately one geneticist for every million residents, according to Lurie Children’s Hospital. The funding will also facilitate more genetic testing on-site at the hospital, which will provide faster results compared to outsourcing tests to external laboratories. Furthermore, the financial support is set to nearly triple the number of gene therapy and clinical research trials conducted at Lurie over the next three to five years.

Dr. Carlos Prada, head of the Edwards Family Division, described the gift as “transformational.” He noted that many children experience lengthy diagnostic journeys, often enduring years of uncertainty while displaying early symptoms of genetic conditions, such as developmental delays. With this funding, Dr. Prada hopes to implement more early testing, which will lead to timely treatments and better management of these conditions.

Rare diseases currently affect between 25 million to 30 million people in the United States, according to the National Human Genome Research Institute. In Illinois alone, approximately 1.5 million individuals are impacted by rare or unidentified diseases, as reported by the Illinois Rare Disease Commission in 2023.

The Edwards’ donation has generated excitement among families navigating similar challenges. Carrie Pinkham, a resident of Western Springs, shared her family’s experience with a “diagnostic odyssey” while seeking answers for her son Jack’s condition. Jack, who was born prematurely, initially exhibited developmental delays attributed to his early birth. However, as he grew, the delays persisted, leading to genetic testing when he was three years old.

Although testing revealed a rare genetic variant, it did not clarify the cause of his condition until he was diagnosed at age nine with Spinocerebellar Ataxia Recessive Type 15. This rare neurological disorder can affect movement and speech, among other issues. Pinkham expressed relief at finally having a name for her son’s condition, alleviating the uncertainty that had burdened their family for years. In 2024, she established the Jack Bear Foundation to raise awareness and fund research for this disorder.

“This gift, to me, means everything as a Lurie family,” Pinkham said. “It signifies that technology is advancing and that the best and brightest are working on these rare conditions right here in our community. It gives hope that we can change the trajectory of our son’s life and help others facing similar challenges.”

The Edwards’ substantial donation is poised to make a lasting impact on the landscape of pediatric genetics, opening new avenues for research and treatment that could fundamentally improve the lives of countless children and their families.