A couple deeply connected to Chicago has made a significant impact in the field of pediatric healthcare by donating $11 million to Lurie Children’s Hospital. This generous gift aims to enhance research, diagnosis, and treatment for children suffering from rare and genetic disorders. The donation will specifically support the newly named Edwards Family Division of Genetics and Rare Diseases.
Don Edwards, founder and executive chairman of the private equity firm Flexpoint Ford, has a personal connection to the cause, having firsthand experience with genetic disorders. He serves on the board of trustees at Lurie and was previously chairman of the University of Illinois board of trustees. His wife, Anne Edwards, is a member of Lurie’s Founders’ Board, and together they are parents to three adult children.
“We know how much genetic diagnosis and potential therapies can change the lives of both the child and the entire family,” Don Edwards expressed. “We’d like to see a lot more treatment.”
Enhancing Genetic Research and Training
The funds will facilitate several key initiatives at Lurie Children’s Hospital, including an expansion of training programs for doctors aspiring to become pediatric geneticists. Currently, Illinois faces a shortage of geneticists, with approximately one geneticist available for every million residents, according to Lurie Children’s Hospital.
In addition, the donation will enable Lurie to conduct more genetic testing within the hospital, leading to quicker results for families. The funding is also expected to nearly triple the number of gene therapy and clinical research trials available at Lurie over the next three to five years. Dr. Carlos Prada, head of the newly named division, noted, “That’s going to translate into more treatments and cures for patients with rare diseases.”
Rare diseases currently affect an estimated 25 million to 30 million Americans, as reported by the National Human Genome Research Institute. In Illinois alone, approximately 1.5 million residents are impacted by rare or unknown diseases, according to a 2023 report from the Illinois Rare Disease Commission.
Personal Stories Highlight the Need for Research
The need for advancements in genetic research is underscored by the experience of families navigating the complexities of rare diseases. Carrie Pinkham, a resident of Western Springs, shared her own family’s challenging journey to diagnosis for her son, Jack. Initially born prematurely, Jack faced developmental delays that were attributed to his early birth. However, as he grew, it became clear that his condition was more complex.
At the age of three, Jack underwent genetic testing, which revealed a rare genetic variance, though its implications remained unclear. It was not until he was nine that he received a definitive diagnosis of Spinocerebellar Ataxia Recessive Type 15, a rare neurological disorder impacting his movement and speech.
For Pinkham, the gift from Don and Anne Edwards is a beacon of hope. “This gift, to me, means everything as a Lurie family,” she stated. “It means a lot that we might be able to change the trajectory of our son’s life and others that have this condition.”
In 2024, Pinkham and her family founded the Jack Bear Foundation to raise awareness about Jack’s disorder and to support related research efforts. The Edwards’ donation is expected to bolster Lurie’s capabilities in this vital area, offering families more options for diagnosis and treatment.
As the landscape of genetic research evolves, the Edwards’ contribution stands to not only accelerate advancements but also to transform the lives of countless children and families grappling with rare genetic conditions.
