Riley Children's Foundation announces $5M gift to advance care of Duchenne muscular dystrophy
Indianapolis — Riley Children’s Foundation today announced a $5 million gift from an Indiana family 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.
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.
“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.”
Duchenne muscular dystrophy is a genetic disorder characterized by the progressive loss of muscle resulting in deterioration of the skeletal, heart, and lung muscles. About 20,000 children are diagnosed globally each year. Due to the Duchenne gene being found on the X-chromosome, the disorder primarily affects males. While the disorder is rare, the results are devastating to impacted families.
“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.”
“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.”
Families will see an immediate impact on patient care through the addition of nurse coordinators who help them navigate the many specialists providing care in a multi-discipline clinic. The gift will also establish a concierge program to support those who must travel from outside Central Indiana.
In addition to improving the delivery of care, the donation will spur the discovery of life-extending therapies for patients with Duchenne muscular dystrophy. In partnership with the Indiana University School of Medicine Department of Pediatrics, Riley will build research programs focused on applying gene therapy and precision medicine approaches – the latter of which will address life-threatening complications of the disease on the heart.
As part of the projected program growth, Riley Children’s Health has formally applied for the prestigious designation of Parent Project Muscular Dystrophy (PPMD) Certified Duchenne Care Center. The Duchenne program is committed to meeting this high standard so families feel confident they can access comprehensive, expert care at Riley.
“A Duchenne diagnosis can leave families feeling overwhelmed and confused,” adds Brian Nicholoff, a Duchenne advocate and Mr. Ackerman’s brother-in-law. “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.”
About Riley Children’s Foundation
Riley Children’s Foundation is Indiana’s preeminent nonprofit dedicated to funding children’s healthcare and the founding organization that opened Riley Hospital for Children in 1924. Today, Riley Children’s Foundation inspires our communities to invest in world-class pediatric research and care at Riley Children’s Health and Indiana University School of Medicine, and in programs like Camp Riley that support the well-being of kids and families.
What the experts are saying
Larry Markham, MD, division chief for pediatric cardiology and co-director of the Riley Heart Center
“Cardiomyopathy is now the leading cause of death in Duchenne muscular dystrophy. Further advances will depend on translational research to better understand how the heart muscle disease evolves and to identify unique Duchenne-specific therapies. This gift will advance care for all patients, plus move forward vital research to improve the cardiomyopathy of Duchenne.”
Marcia Felker, MD, child neurologist and Director of the Pediatric Neuromuscular/Muscular Dystrophy Association (MDA) Clinic at Riley Children’s Health
“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. Having so many doctor appointments is very hard and sometimes overwhelming for a patient and their families. Through the addition of more care coordinators with this incredible and generous gift from the Ackerman and Nicholoff family, we will be able to really shepherd the families through the process in a way that reduces the stress of the experience and best meets the needs of the patient and their family.”
Pat Furlong, president and CEO of Parent Project Muscular Dystrophy
“We at PPMD are deeply grateful to the Ackerman and Nicholoff family for this incredible gift to develop a multi-disciplinary Duchenne focused care center for families in Indiana. We are thrilled that Riley Children’s Health has initiated the process of Certification to join PPMD’s Certified Duchenne Care Center (CDCC) network of 30 clinical centers across the country. Duchenne families will be in good hands at Riley. Standardizing care at PPMD’s CDCCs improves Duchenne research, clinical trials and accelerates the time it takes to get therapies to those who need them.”