Awards, Children's Health

Parent Project Muscular Dystrophy Announces Pediatric Certified Duchenne Care Center, Helen DeVos Children’s Hospital

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

**Sharing on behalf of Parent Project Muscular Dystrophy**

WASHINGTONMay 11, 2022 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 Program (CDCCP) with the certification of the clinic at Spectrum Health Helen DeVos Children’s Hospital (HDVCH) in Grand Rapids, Michigan. This is an exciting step for the CDCCP as it is the first certification in the state of Michigan and marks the 30th clinic currently holding certification in the US.

Rachel Schrader, MS, APRN, CPNP-PC, PPMD’s Vice President of Clinical Care and Education says the certification of Helen DeVos is a welcome addition to the CDCC network in bringing optimal Duchenne care to Michigan and the greater region. “For many years, families felt they needed to travel to other states to access standardized care at a CDCC. We are pleased that the certification of HDVCH brings a CDCC to the state of Michigan as well as improves access to care for so many families who live in the region. The team at Helen DeVos is doing great work, and we are excited to recognize that and share it with the community.”

HDVCH is a growing center and currently serves a population of approximately 60 people living with Duchenne and Becker muscular dystrophy. Led by its two co-directors, Dr. Jena Krueger and Dr. Steven DeRoos, the HDVCH team is actively engaged in both the continued growth and development of its Duchenne program and in a variety of clinical trial opportunities, ensuring they can bring cutting edge therapies to their patients.

“We are proud to partner with PPMD and honored to receive the CDCCP certification,” said Dr. Jena Krueger, section chief of the pediatric neuromuscular clinic at Spectrum Health Helen DeVos Children’s Hospital. “Providing comprehensive, evidence-based, forward-thinking care is important, and we look forward to providing this next-level care to our patients across Michigan.”

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.

DeAnne Friar, a member of the PPMD Board of Directors and Grand Rapids local whose son receives care at Helen DeVos, shared, “We could not be more thrilled that HDVCH is now a Certified Duchenne Care Center. It is comforting to know that we are getting the highest level of Duchenne care right here in Michigan.”

To learn more about PPMD’s Certified Duchenne Care Center Program, visit PPMD’s websiteClick 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 FacebookTwitterInstagram, and YouTube.

ABOUT HELEN DEVOS CHILDREN’S HOSPITAL:

People are at the heart of everything we do, and the inspiration for our long and continuing legacy of strong community partnerships, philanthropy and transparency. Our award-winning team improves health, inspires hope and saves lives across 13 counties in West Michigan. We bring together 11 hospitals—including Spectrum Health Helen DeVos Children’s Hospital, with expert care from 350+ pediatric specialists in 70+ specialties and programs—three rehabilitation and nursing centers, 120 outpatient sites and telehealth services. We are proud to work with 4,000 physicians and advanced practice providers, including Spectrum Health Medical Group, one of the largest and most comprehensive multispecialty physician groups in West Michigan.

 

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Contact:
Andrea Finnigan
Media Relations and Newsroom Web Manager
Office: 616.486.2535
Mobile: 616.293.6050
Email: andrea.finnigan@spectrumhealth.org