UC Davis Duchenne team honored by national parent organization
The UC Davis Neuromuscular Research Center has been recognized as a Certified Duchenne Care Center by Parent Project Muscular Dystrophy for national leadership in treating Duchenne muscular dystrophy.
The certification, awarded currently to just 15 centers, supports high standards of care for Duchenne, a genetic disorder that progressively weakens muscle strength. A plaque commemorating the certification was presented to the center’s physicians, nurses and therapists recently by Julie Cosgrove-Garcia, a project volunteer, and her son Nick, who is living with Duchenne.
“I want to thank UC Davis for bringing together a strong group of clinicians for our children with Duchenne,” said Cosgrove-Garcia. “My son, Nick, our family and all families living with Duchenne are extremely grateful.”
UC Davis’ nationally prominent center unites a multidisciplinary team that includes specialty care physicians in diverse disciplines such as neuromuscular medicine, pediatric pulmonary medicine and pediatric cardiology to provide evidence-based approaches to treating Duchenne and similar conditions. The team also actively investigates novel diagnostic and therapeutic approaches, with the goal of improving the lives of people with neuromuscular diseases.
Duchenne affects about 1 in 5000 patients – mostly boys – worldwide. It usually becomes apparent in early childhood, as weakened skeletal muscles cause delays in milestones such as sitting and walking. Children usually become wheelchair-dependent during their teens. As heart muscle is increasingly affected, the disease becomes life threatening and many patients die from heart failure in their 20s.
“This recognition is especially meaningful because it comes from a community of parents who are committed to setting high standards for Duchenne care,” said Craig McDonald, director of the center and chair of the Department of Physical Medicine and Rehabilitation, where the center is based. “We are deeply honored to be part of their network and help ensure that all people with Duchenne have access to the best possible care.”
McDonald and his team, which includes associate research director Erik Henricson, have been actively involved in a number of research studies designed to improve the lives of people with neuromuscular diseases. Their research program focuses on understanding the causes of diseases and their secondary conditions, improving preventive care, and developing better therapies using state of the art technologies and innovative approaches to the study of disease.
Kathi Kinnett, senior vice president of clinical care and co-director of the Transforming Duchenne Care Initiative, was pleased to honor the UC Davis Health team.
“UC Davis has historically been a center widely acclaimed for their extraordinary neuromuscular research programs,” said Kinnett. “We are thrilled to now recognize their provision of care and services, and include them in our growing network of Certified Duchenne Care Centers, providing access to optimal comprehensive Duchenne care to our Northern California families.”
More information about Duchenne care and research at UC Davis is at http://www.ucdmc.ucdavis.edu/pmr/research/Index.html
More information about Parent Project Muscular Dystrophy and the certification program is at http://www.parentprojectmd.org/site/PageServer?pagename=nws_index