Parent Project Muscular Dystrophy names Stead Family Children’s Hospital a certified Duchenne Care Center
Hackensack, NJ - February 6, 2015 - University of Iowa Stead Family Children’s Hospital (UI Stead Family Children’s Hospital) was named a Certified Duchenne Care Center by Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne) and demanding optimal care for all people with Duchenne. UI Stead Family Children’s Hospital is the seventh center to be certified by PPMD, recognizing the Hospital’s dedication to improving care for people living with Duchenne.
Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately one in every 3,500-5,000 live male births.
In 2014, PPMD launched the Certified Duchenne Care Center Program as part of its robust Transforming Duchenne Care Initiative (TDCI). PPMD will continue to award qualified centers the title of Certified Duchenne Care Center in an effort to ensure 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 Care Considerations. As part of its ongoing mission to end Duchenne, PPMD continues to insist that all people with Duchenne receive comprehensive care.
UI Stead Family Children’s Hospital is Iowa’s only comprehensive children’s hospital and the sole hospital in Iowa nationally ranked for pediatric health care. All of Iowa’s pediatric neuromuscular experts are located at UI Stead Family Children’s Hospital. With this certification, PPMD recognizes the quality of the neuromuscular care for children living with Duchenne provided by the multidisciplinary team led by Katherine Mathews, MD. This team illustrates the dedication to the Duchenne community that the certification program seeks to promote.
Kathi Kinnett, MSN, CNP, PPMD’s Senior Vice President of Clinical Care and co-director of TDCI remarked, “Dr. Mathews has been a long-time friend and advocate of the Duchenne community. She and her team at the University of Iowa were one of the first centers to identify and implement the necessary elements of comprehensive care for children living with this difficult disease. We are so grateful to Dr. Mathews’ team for maintaining their high standards in both research and care, and continuing to find ways to improve the lives of these amazing patients.”
“We are delighted to receive this recognition from PPMD. PPMD is a powerful and tireless leader in promoting improved diagnosis, management and community involvement for individuals with Duchenne and Becker muscular dystrophy,” Dr. Mathews says. “In my years of practice, I have seen impressive improvements in management of these diseases, and I expect this to accelerate as we test an expanding list of potential treatments. Our neuromuscular team looks forward to continuing to work with our colleagues and friends at PPMD to promote all aspects of health and well-being for patients and their families.”
To learn more about PPMD’s Certified Duchenne Care Center Program, visit PPMD’s website.
About Duchenne Muscular Dystrophy
Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately one in every 3,500-5,000 live male births (about 20,000 new cases worldwide each year). Because the Duchenne gene is found on the X-chromosome, it primarily affects boys; however, it occurs across all races and cultures.
Duchenne results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin. Because dystrophin is absent, the muscle cells are easily damaged. The progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs. Young men with Duchenne typically live into their late twenties.
Duchenne can be passed from parent to child, but approximately 35 percent of cases occur because of a random spontaneous mutation. In other words, it can affect anyone. Although there are medical treatments that may help slow its progression, there is currently no cure for Duchenne
About Parent Project Muscular Dystrophy
Duchenne is a fatal genetic disorder that slowly robs young men of their muscle strength. Parent Project Muscular Dystrophy (PPMD) is the largest most comprehensive nonprofit organization in the United States focused on finding a cure for Duchenne muscular dystrophy—our mission is to end Duchenne.
We invest deeply in treatments for this generation of young men affected by Duchenne and in research that will benefit future generations. We advocate in Washington, DC, and have secured hundreds of millions of dollars in funding. We demand optimal care, and we strengthen, unite and educate the global Duchenne community.
Everything we do—and everything we have done since our founding in 1994—helps boys with Duchenne live longer, stronger lives. We will not rest until every young man has a treatment to end Duchenne. Go to the Parent Project Muscular Dystrophy website for more information or to learn how you can support our efforts and help families affected by Duchenne.
About University of Iowa Stead Family Children’s Hospital
University of Iowa Stead Family Children’s Hospital has been dedicated to meeting the health care needs of children and families since 1919. As Iowa’s only comprehensive children’s hospital, we provide care for children from birth to young adulthood. Services range from promoting wellness to the care of general childhood illness, surgery, traumatic injuries, life-threatening and chronic illnesses, and developmental disabilities.
The UI Stead Family Department of Pediatrics has a longstanding commitment to the care of children with neuromuscular diseases. It is the administrative home for the Iowa Neuromuscular Program that was founded in the mid-1980s and receives ongoing support from the State of Iowa Department of Public Health to ensure access to comprehensive health care services for children and adults with neuromuscular diseases.
As part of an academic medical center, UI Stead Family Children’s Hospital also performs groundbreaking research to help solve the mysteries of childhood diseases and trains the next generation of health care professionals. The Carver College of Medicine’s commitment to research in Duchenne muscular dystrophy includes Dr. Keven Campbell’s early involvement in identifying the dystrophin protein. A close collaboration between clinicians and researchers continues, fostered by the Iowa Wellstone Center.