A couple with deep ties to the Chicago area is donating $11 million to Lurie Children’s Hospital in hopes of speeding research, treatment and diagnosis for children with rare and genetic disorders.
Don and Anne Edwards’ gift will support the Edwards Family Division of Genetics and Rare Diseases. Don Edwards is the founder and executive chairman of Flexpoint Ford, a private equity investment firm focused on financial services.
Don Edwards said his family has experience with genetic disorders and rare diseases. He is also on the board of trustees at Lurie, and was previously chairman of the University of Illinois board of trustees. Anne Edwards is on Lurie’s Founders’ Board, and the couple have three grown children.
“We know how much genetic diagnosis and potential therapies can change the lives of both the child (and) the entire family,” Don Edwards said. “We’d like to see a lot more treatment.”
Specifically, the money will go toward expanding training for doctors hoping to become pediatric geneticists. Now, there’s a shortage of geneticists, with only about one geneticist per million residents in Illinois, according to Lurie.
The money also will allow Lurie to do more genetic testing at the hospital, rather than through outside labs, meaning much quicker results. And the gift will be used to nearly triple the number of gene therapy and clinical research trials at Lurie over the next three to five years.
“That’s going to translate into more treatments and cures for patients with rare diseases,” said Dr. Carlos Prada, head of the newly renamed division at Lurie.
Now, rare diseases affect about 25 million to 30 million Americans, according to the National Human Genome Research Institute. Rare or unknown diseases affect about 1.5 million people in Illinois, according to a 2023 report by the Illinois Rare Disease Commission.
Prada called the gift “transformational.”
In many cases, it can take years for a child who may be experiencing early symptoms of a disorder, such developmental delays, to be diagnosed with a rare, genetic condition, Prada said. Prada hopes the gift allows more early testing to enable earlier treatment or better management of conditions, with supportive and preventive care.
Parent Carrie Pinkham, of Western Springs, is excited that the gift will enhance Lurie’s ability to help children with rare and genetic disorders. Pinkham’s family endured their own “diagnostic odyssey” for years trying to find answers about her son Jack’s condition.
Jack, now 12, was born prematurely, so, at first, everyone thought he was experiencing certain delays because of his prematurity, she said. But his speech and motor delays persisted. When Jack was 3 years old, he underwent genetic testing that revealed a rare genetic variance, but it was still unclear whether that variance was causing his issues.
It wasn’t until Jack was about 9 years old — after advances in research — that he was diagnosed with Spinocerebellar Ataxia Recessive Type 15, a rare genetic, neurological disorder that can affect movement and speech among other things.
Pinkham said it was a “relief” to have a name for Jack’s condition, and to no longer have to chase a diagnosis. In 2024, Pinkham and her family created the Jack Bear Foundation to raise awareness of the disorder and to fund research.
“This gift, to me, means everything as a Lurie family, that the technology is going to be advanced, that they have the best and brightest right here in our backyard working on these rare conditions,” Pinkham said. “It means a lot that we might be able to change the trajectory of our son’s life and others that have this condition.”