Riley Children’s Foundation has received a $5 million donation for the Duchenne muscular dystrophy program at Riley Children’s Health, the foundation announced Monday.
The gift came from the three children of Jim Ackerman, a local cable television industry entrepreneur and venture capitalist who died in 2013: John Ackerman and his wife, Kathy; Barbara (Ackerman) Nicholoff and her husband, Brian; and Leslie Ackerman.
The foundation said the family has been affected by Duchenne muscular dystrophy, or DMD, a genetic disorder characterized by progressive deterioration of the skeletal, heart and lung muscles, typically resulting in death by the late 20s. About 20,000 children, primarily males, are diagnosed with DMD each year.
The foundation said it plans to use the gift to “propel the Duchenne muscular dystrophy program at Riley Children’s Health into one of the best in the country and ensure all Indiana children with the disorder have access to expert care close to home.”
John Ackerman is managing director of Indianapolis-based investment firm Cardinal Equity Partners, which he cofounded as Cardinal Ventures in 1993 with his father, using the proceeds from the sale of cable firm Cardinal Communications.
“We want patients with Duchenne to have the healthiest and most fulfilling life possible,” John Ackerman said in written remarks. “This gift will ensure patients receive expert care from a team that truly understands and can help navigate the complex challenges families face.”
Riley plans to use the gift to add nurse coordinators and establish a concierge program to support those who must travel from outside central Indiana. Funds will also go toward new research involving gene therapy and precision medicine conducted in partnership with the Indiana University School of Medicine Department of Pediatrics.
“We are extraordinarily thankful to the Ackerman and Nicholoff family for their visionary generosity,” said Elizabeth Elkas, president and CEO of Riley Children’s Foundation. “Together, we will work toward a future in which children born with Duchenne go on to live long, full lives as a result of highly personalized care and new treatments that arise from Riley research.”
Additionally, Riley Children’s Health has formally applied for the designation of Parent Project Muscular Dystrophy Certified Duchenne Care Center, a standard that is expected to help families feel confident they can access comprehensive, expert care at Riley.
“A Duchenne diagnosis can leave families feeling overwhelmed and confused,” Brian Nicholoff said. “With this gift, we are creating a one-stop destination Duchenne Center at Riley. Families impacted by this disorder will get the care, guidance, and resources they need all in one place for every step of their journey.”