July 20, 2023 / Care,CDCC Spotlight

CDCC Spotlight: Nemours Children’s Hospital

Nemours Children's Hospital, Wilmington, Delaware

A Gold Standard of Collaboration 

PPMD’s Certified Duchenne Care Centers (CDCC) are clinics of excellence, demonstrating comprehensive and coordinated care for individuals living with Duchenne and Becker muscular dystrophy. Dr. Mena Scavina, Pediatric Neurologist and director of the Certified Duchenne Care Center at Nemours Children’s Hospital in Wilmington, Delaware, and her team are an outstanding model of coordination and collaboration. 

The neuromuscular team at Nemours Children’s cares for approximately 80 individuals living with Duchenne and Becker Muscular Dystrophy under the leadership of Dr. Scavina. As Professor of Neurology and Pediatrics at Thomas Jefferson University, her responsibilities include teaching and working with medical students, neurology and pediatric residents, and child neurology fellows. This opportunity to work with students and trainees allows Dr. Scavina an avenue to increase awareness of neuromuscular diseases for the next generation of physicians.

Dr. Scavina has long been passionate about helping individuals with neuromuscular conditions. Growing up, there were two brothers living with Duchenne three houses down from hers.  She watched as they became non-ambulatory and their disease progressed to where they no longer took part in sports or other activities in the neighborhood. As she and her siblings were active in dance and sports, the idea that these young men could no longer participate, made a lasting impression on her. She began to have “carnivals” in her backyard to raise money for muscular dystrophy when she learned about Duchenne on the Labor Day telethon, in the hopes of helping her neighbors and other children living with muscular dystrophy. 

Decades later, Dr. Scavina is still passionate about advancing care and quality of life for individuals with Duchenne and Becker muscular dystrophy. She has led several efforts of collaboration among clinicians and researchers from within Nemours Health as well as outside centers, including the University of Delaware and Thomas Jefferson University. These partnerships have been a means of offering trials and opportunities to Duchenne families followed at Nemours, as well as learning more about dystrophinopathies. Some of the collaborative efforts by Dr. Scavina and the Nemours team include:

  • NIH funded study of vascular resistance and other factors which impact the heart in Duchenne and Becker with Dr. Melissa Witman at the University of Delaware.
  • Publication on postoperative complications and cardiopulmonary function following scoliosis correction in Duchenne with Dr. Jason Howard, orthopedic surgeon. 
  • Work with Dr. Tariq Rahman and the Rehabilitation Engineering Department at Nemours on the Wilmington Robotic Exoskeleton (WREX) which is utilized by children with a variety of neuromuscular and orthopedic issues.  
  • Development of an upper extremity device entitled the Nurosleeve with Dr. Mijail Serruya and Dr. Alessandro Napoli at the Raphael Center for Neurorestoration at Thomas Jefferson University in Philadelphia.

It is clear that Dr. Scavina and the entire team at Nemours Children’s Hospital, Delaware are dedicated to cross-collaboration in order to improve the lives of every individual living with Duchenne and Becker muscular dystrophy.  PPMD is extremely appreciative to have Nemours Children’s as part of our clinic network.

To connect with the Nemours neuromuscular team, please visit our website or email careteam@parentprojectmd.org for more information. 

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