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.
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.
“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,” says Rachel Schrader, MS, APRN, CPNP-PC, PPMD’s Vice President of Clinical Care and Education and Director of the CDCC Program.
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,” Felker says. “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.
“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,” Schrader adds.
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,” Brian Nicholoff says.
[Source(s): Parent Project Muscular Dystrophy, PR Newswire]
