Parent Project Muscular Dystrophy Announces Pediatric Certified Duchenne Care Center, Riley Children's Health

Leading Duchenne Organization Expands Certification of Clinics that Provide Optimal Care for People with Duchenne Muscular Dystrophy with 1st Clinic in Indiana

WASHINGTON, Nov. 10, 2022 /PRNewswire/ -- Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), announced the expansion of their renowned Certified Duchenne Care Center (CDCC) Program with the certification of the clinic at Riley Children's Health (Riley Children's), part of the Indiana University Health System in Indianapolis, Indiana. This is an exciting step for the CDCC Program as it brings standardized Duchenne care to a new region of the country with the first certification in the state of Indiana.

Rachel Schrader, MS, APRN, CPNP-PC, PPMD's Vice President of Clinical Care and Education and Director of the CDCC Program, acknowledges the significance of the program's expansion to include Riley Children's. "The neuromuscular team at Riley Children's has evolved significantly over the past several years to better serve their Duchenne and Becker population, and we are thrilled to include them in our network of certified centers. This certification comes after much advocacy and investment in the program, and we are delighted to recognize those efforts and the excellent level of care the team provides with their inclusion in our CDCC program," said Schrader.

Riley Children's Health is the largest provider of Duchenne care in Indiana and serves a population of over 120 patients living with "dystrophinopathy," the spectrum of muscle diseases that are caused by a change in the dystrophin gene. The center serves patients from throughout Indiana and the surrounding region.

Under the leadership of Dr. Marcia Felker, the clinic's director and lead neuromuscular neurologist, the team continues to grow with plans for expansion of their critical support network, including expanded nursing and social work services. This will further elevate the care they already provide to their patients, continuing to build upon the comprehensive, quality care they ensure their patients receive. 

"Our Neuromuscular Center at Riley Children's Health is changing the lives of patients and families impacted by Duchenne and Becker muscular dystrophies, offering advanced treatments and compassionate care from a multi-disciplinary team of experts," said Felker. "This certification signifies our continuing commitment to enhancing the quality of life for our patients and furthering pivotal research towards a cure."

PPMD's Certified Duchenne Care Center Program supports standardized, comprehensive care and services for all people living with Duchenne. Certification means centers maintain the highest standards in clinical and sub-specialty services, rapidly apply new evidence-based knowledge, minimize heterogeneity in clinical research outcomes, and comply with standards in clinical care that were established by the CDC's Care Considerations. As part of its ongoing mission to end Duchenne, PPMD continues to insist that all people with Duchenne receive comprehensive care.

Schrader is delighted to add Riley to the growing network of Certified Duchenne Care Centers and to expand the program to include its first center in the state of Indiana. "PPMD and the CDCC Certification Committee are truly impressed with the work the team at Riley is doing to provide and advance care for people living with Duchenne. It is clear that the clinic team, researchers, and hospital administration are deeply committed to contributing to the lives of people with Duchenne and Becker, and for that we are grateful. We are excited to see what good will come from this partnership for the Duchenne community, and look forward to a long and productive collaboration," said Schrader.

The program's expansion is due in large part to a recent generous $5 million gift to the Riley Children's Foundation from the Ackerman and Nicholoff families, who are Indiana natives and long-time supporters of the advancement of Duchenne care and research initiatives, with the goal of establishing Indiana's first Certified Duchenne Care Center. "Our families are very excited and look forward to the opening of this new CDCC, knowing that the most comprehensive care will be offered to all ages of those afflicted with Duchenne and Becker," said Brian Nicholoff.

To learn more about PPMD's Certified Duchenne Care Center Program, visit PPMD's website. Click here to learn more about the history of PPMD's Certified Duchenne Care Center Program and to access PPMD's first published article on the program.

About Parent Project Muscular Dystrophy:

Duchenne is a fatal genetic disorder that slowly robs people of their muscle strength. Parent Project Muscular Dystrophy (PPMD) fights every single battle necessary to end Duchenne.

We demand optimal care standards and ensure every family has access to expert healthcare providers, cutting edge treatments, and a community of support. We invest deeply in treatments for this generation of Duchenne patients and in research that will benefit future generations. Our advocacy efforts have secured hundreds of millions of dollars in funding and won five FDA approvals.

Everything we do—and everything we have done since our founding in 1994—helps those with Duchenne live longer, stronger lives. We will not rest until we end Duchenne for every single person affected by the disease. Join our fight against Duchenne at EndDuchenne.org. Follow PPMD on Facebook, Twitter, Instagram, and YouTube. 

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.

SOURCE Parent Project Muscular Dystrophy (PPMD)