$5M Gift to Bolster Muscular Dystrophy Efforts at Riley
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An Indiana family has given $5 million to Riley Children’s Health to help the hospital become a national leader in the research of Duchenne muscular dystrophy, a rare, genetic condition that is characterized by progressive muscle damage and weakness. Riley Children’s Foundation says the donation is from three siblings and their spouses whose family has been affected by Duchenne muscular dystrophy: John Ackerman and his wife, Kathy; Barbara Nicholoff and her husband, Brian; and Leslie Ackerman.
The family says it wants the Duchenne program at Riley to be one of the best in the country and ensure Indiana children with the disorder have expert care close to home.
“We want patients with Duchenne to have the healthiest and most fulfilling life possible,” says John Ackerman, managing director of Indianapolis-based Cardinal Equity Partners. “This gift will ensure patients receive expert care from a team that truly understands and can help navigate the complex challenges families face.”
Riley says Duchenne is characterized by the progressive loss of muscle, resulting in deterioration of skeletal, heart and lung muscles. About 20,000 children are diagnosed globally each year.
“This gift allows us to strategically build on our strengths and realize our vision of making Riley Children’s Health a national leader and referral center for children with Duchenne,” says Gil Peri, president of Riley Children’s Health. “Riley has a history of clinical excellence and groundbreaking discoveries supporting advances in pediatric health across the board. We’re eager to take the next steps to advance care for those affected by Duchenne.”
In addition to research funding, the money will also have a direct impact on families. The gift will allow for the hiring of additional nurse coordinators to help families navigate the many specialists they encounter.
“Children with Duchenne must see nearly 10 specialists to care for their needs ― from neurologists like myself, to cardiologists and rehabilitation medicine experts, to geneticists and endocrinologists,” explains Dr. Marcia Felker, director of the Pediatric Neuromuscular/MDA Clinic at Riley. “Having so many doctor appointments is very hard and sometimes overwhelming for a patient and their families.”