Couple Pledges $11 Million to Advance Rare Disease Research

A couple from the Chicago area has announced a generous donation of $11 million to support research and treatment for children affected by rare and genetic disorders at Lurie Children’s Hospital. Don and Anne Edwards’ contribution aims to enhance the capabilities of the newly established Edwards Family Division of Genetics and Rare Diseases, significantly impacting the landscape of pediatric genetic care.

Don Edwards, the founder and executive chairman of Flexpoint Ford, a private equity investment firm, highlighted the personal importance of this initiative. “We know how much genetic diagnosis and potential therapies can change the lives of both the child and the entire family,” he stated. With a background in overseeing significant educational institutions, Edwards also serves on the board of trustees at Lurie. His wife, Anne, is an active member of Lurie’s Founders’ Board, and together, they have three adult children.

The donation will primarily focus on several critical areas, including expanding training programs for future pediatric geneticists. Currently, Illinois faces a shortage of geneticists, with only about one geneticist available per million residents, according to Lurie Children’s Hospital. The funds will also facilitate more genetic testing within the hospital itself, expediting the process and providing quicker results for families in need.

In addition to improving diagnostic capabilities, the gift is expected to nearly triple the number of gene therapy and clinical research trials at Lurie over the next three to five years. Dr. Carlos Prada, the head of the new division, described the donation as “transformational.” He emphasized that advances in early testing could lead to earlier diagnoses and better management options for children exhibiting symptoms of rare genetic conditions.

According to the National Human Genome Research Institute, rare diseases currently affect approximately 25 million to 30 million individuals across the United States. In Illinois alone, around 1.5 million residents are impacted by rare or unknown diseases, as reported by the Illinois Rare Disease Commission in 2023.

The significance of this donation is underscored by the experiences of parents like Carrie Pinkham from Western Springs. Her family faced a lengthy “diagnostic odyssey” while seeking answers for her son Jack’s condition. Initially thought to be caused by his premature birth, Jack’s developmental delays persisted, leading to a genetic test at the age of three. His eventual diagnosis of Spinocerebellar Ataxia Recessive Type 15, a rare neurological disorder, came only after extensive research developments.

“It was a relief to finally have a name for Jack’s condition,” Pinkham reflected. The family later established the Jack Bear Foundation to raise awareness of the disorder and support research efforts. She expressed gratitude for the Edwards’ donation, stating, “This gift means everything to us as Lurie families, as it advances technology and brings the best and brightest right here to work on these rare conditions.”

As more families seek answers and treatment options, the Edwards’ substantial gift is poised to create lasting change in the realm of pediatric genetics, offering hope to countless children and their families facing the challenges of rare diseases.