HACKENSACK, N.J., May 6, 2021 /PRNewswire/ — Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), today announced a grant to Nemours/Alfred I. duPont Hospital for Children in Wilmington, Delaware, allowing Dr. Mena Scavina, director of the hospital’s muscle clinic, to spend dedicated time working as an advisor to the PPMD team. As part of this new role, Dr. Scavina will develop and optimize a variety of programs within PPMD’s portfolio to advance clinical care to all people living with or affected by Duchenne.
Nemours was named a Certified Duchenne Care Center (CDCC) by PPMD in August 2017, and is one of 28 certified centers throughout the United States. Through the certification program, PPMD established an ongoing and collaborative relationship with Dr. Scavina, the center’s neuromuscular program director.
Since certification in 2017, Dr. Scavina has served in a variety of voluntary roles with PPMD, including as a member of the CDCC Certification Committee, where she attended a number of site visits and facilitated the certification of several CDCCs, aiding in the program’s expansion. She also served as a member of the Steroid Stakeholder Advisory Board, and as a speaker at a variety of PPMD-hosted engagements including the Females with Dystrophinopathy Conference (2019), End Duchenne Tour (2019 and 2020), and Duchenne Professionals Masterclass (2021), as well a variety of community-focused educational webinars.
In her new role with PPMD, Dr. Scavina will focus on four primary projects. The first is the continued support and expansion of the CDCC network, particularly the global division of the program. The CDCC network currently has two international sites, one in South Africa and another in the Czech Republic, and recognizes the importance of advancing access to standardized Duchenne care regardless of where people live. Additionally, she will create programming and support resources for both international and domestic care centers via the development of a mentorship program. This program will allow centers interested in becoming a CDCC to connect with peers at certified institutions to learn and optimize Duchenne care. Dr. Scavina also intends to develop and implement a standardized model of care for Duchenne carrier females, with hopes of creating a sub-certification for centers delivering excellent carrier care in line with published standards. Lastly, Dr. Scavina will offer advisory services to the organization and partake in ongoing collaborations with other Duchenne community organizations and companies.
Through each of these roles, PPMD is optimistic that programming will continue to drive forward access to excellent care to all people living with Duchenne, regardless of where they live or how they are affected.
The addition of Dr. Scavina to the PPMD team is an integral step in advancing and expanding PPMD’s portfolio of care programs and facilitating access to care for all people affected by Duchenne. Additionally, PPMD is pleased to add a practicing physician to staff to allow for richer clinical practice insights and advising to both the PPMD team and external Duchenne community organizations and companies.
“The word ‘Dr.’ is not simply a prefix for Mena Scavina, it is her superpower, offering observation, reason, understanding, courage and hope to every patient and family living with Duchenne. We welcome Dr. Scavina to the PPMD team with open arms and are thrilled for everything we will do together for the Duchenne community,” said Pat Furlong, President & CEO of PPMD.
About her newly dedicated time partnering with PPMD on continued patient advocacy, Dr. Scavina shared, “I have always appreciated the team spirit and great work done at PPMD in so many areas to care for individuals and families living with Duchenne and Becker muscular dystrophy and to change the course of the disease. I am very grateful that they have given me the opportunity to be involved in some amazing projects as I continue my work at Nemours.”
PPMD’s Certified Duchenne Care Center (CDCC) Program supports standardized, comprehensive care and services for all people living with Duchenne. Certification is granted to centers that 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.
ABOUT THE NEMOURS CERTIFIED DUCHENNE CARE CENTER PROGRAM:
The Nemours Certified Duchenne Care Center program offers coordinated care and a team of skilled experts to serve people with muscular dystrophy, including neurologists, orthopedic surgeons, pulmonologists, cardiologists, advanced practice nurses, genetic counselors, respiratory, physical, and occupational therapists, social workers, dietitians, rehabilitation engineers, biomedical researchers, behavioral health providers, and orthotics/prosthetics specialists. A Transition Program and Palliative Care team are also an integral part of the program. The team works together in a multidisciplinary clinic to ensure complete care delivered with the utmost convenience for patients and their families
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 Facebook, Twitter, Instagram, and YouTube.
ABOUT NEMOURS CHILDREN’S HEALTH SYSTEM:
Nemours is an internationally recognized children’s health system that owns and operates two free-standing children’s hospitals: Nemours/Alfred I. duPont Hospital for Children in Wilmington, Del., and Nemours Children’s Hospital in Orlando, Fla., along with more than 80 outpatient facilities in five states, delivering pediatric primary, specialty and urgent care. Nemours also powers the world’s most-visited website for information on the health of children and teens, KidsHealth.org, and offers on-demand, online video patient visits through the Nemours App. Established as The Nemours Foundation through the legacy and philanthropy of Alfred I. duPont, Nemours provides pediatric clinical care, research, education, advocacy and prevention programs to the children, families and communities it serves.
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SOURCE Parent Project Muscular Dystrophy (PPMD)
