WASHINGTON, Jan. 26, 2024 /PRNewswire/ — In a monumental stride towards improving the lives of children affected by Duchenne muscular dystrophy (Duchenne), Parent Project Muscular Dystrophy (PPMD) proudly announces that Minnesota has approved the addition of Duchenne to the state’s newborn screening panel. This remarkable milestone comes after years of dedicated advocacy by PPMD, in collaboration with partners and families, to break down barriers to treatment and care for the Duchenne community.
Once implemented, every one of the approximately 63,000 babies born in Minnesota annually will undergo newborn screening for Duchenne, ensuring not only early diagnosis but also equitable access to care. This program is projected to identify at least six babies with Duchenne each year, significantly improving the prognosis for affected individuals and their families.
Minnesota is now the third state, after Ohio and New York, to approve newborn screening for Duchenne. This milestone represents a significant advancement in the broader effort to expand newborn screening for Duchenne to other states.
Pat Furlong, PPMD’s President and CEO, passionately emphasizes the significance of newborn screening in Minnesota, stating, “PPMD’s mission is to accelerate research, impact policy, demand optimal care for every single family, and strive to ensure access to approved therapies. Families with newborns identified through the newborn screening program will benefit from monitoring their child’s development, receiving appropriate physical and speech therapy, genetic counseling, and carrier screening for family members. With seven FDA-approved treatments for Duchenne, including four approved for infancy and additional potential therapies in development, our commitment to demanding optimal care and ensuring access to therapies means care when it has the ability to provide the most benefit—early in a child’s life.”
PPMD remains unwavering in its commitment to breaking down barriers related to the diagnosis, care, and treatment of individuals living with Duchenne muscular dystrophy at all stages of life. This commitment extends to supporting families with newborns identified through newborn screening by providing educational resources, connecting them with experienced peer mentors, and educating healthcare providers involved in the screening process.
Lauren Stanford, PPMD’s Director of Advocacy, acknowledges the remarkable impact of the Duchenne community in the passage of this legislation, stating, “We extend our heartfelt gratitude to the determined families and dedicated clinicians who provided compelling testimony in Minnesota throughout this process. It is your unwavering dedication, passion, and tireless efforts that have played a truly pivotal and transformative role in achieving this success.”
PPMD has been building the infrastructure for early identification of newborns with Duchenne—including a robust therapeutic pipeline, regulatory infrastructure, and clinical care network and guidelines—since its inception and preparing for the implementation of NBS for Duchenne for almost a decade.
To learn more about PPMD’s work in newborn screening, click here.
About Parent Project Muscular Dystrophy
Duchenne is a genetic disorder that slowly robs people 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—our mission is to end Duchenne.
We demand optimal care standards and strive to 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 seven 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 and follow PPMD on Facebook, Twitter, and YouTube.
SOURCE Parent Project Muscular Dystrophy (PPMD)
Originally published at https://www.prnewswire.com/news-releases/duchenne-muscular-dystrophy-added-to-minnesotas-newborn-screening-panel-302045891.html
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