Leading Duchenne Organization Encourages Families to
Join the Fight to End Duchenne Muscular Dystrophy
WASHINGTON, Aug. 28, 2023 /PRNewswire/ — Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), will join forces with fellow Duchenne-specific organizations from around the world to encourage families affected by Duchenne to share their story for World Duchenne Awareness Day on September 7. An initiative led by the World Duchenne Organization, World Duchenne Awareness Day aims to raise awareness about Duchenne and Becker muscular dystrophy.
World Duchenne Awareness Day has continued to grow since its inception in 2014, with cities issuing proclamations, local landmarks lighting up red, and thousands taking to social media to bring attention to Duchenne. This year’s theme for World Duchenne Awareness Day is “Duchenne: Breaking Barriers.” With this, PPMD and fellow organizations are encouraging families and friends of the community to break down physical, healthcare, social, and other barriers in Duchenne.
To build on these efforts, PPMD will lead a month-long awareness, fundraising, and education campaign this September called Duchenne Action Month. Throughout the month of September, PPMD will encourage the Duchenne community to help raise awareness, educate patients on the latest research and care, advocate at both the national and local level, and host fundraising events.
PPMD’s Founding President and CEO, Pat Furlong, explains why September was chosen for Duchenne Action Month: “With the growing global recognition of World Duchenne Awareness Day and the ongoing success of PPMD’s Coach To Cure MD program, as well as Congress returning to session after summer recess and children heading back to school, September is an opportunity for our community and those who support our community to learn more about Duchenne, raise awareness, and raise funds to help support the fight to end Duchenne.”
Furlong continues, “This year we acknowledge and applaud the work being done to break barriers in Duchenne. PPMD continues to expand our work so that all those living with Duchenne and Becker are looking to a brighter future. This year we saw the first gene therapy approval for Duchenne, and our network of Certified Duchenne Care Centers provide families across the country the optimal care they need. We’re breaking barriers on Capitol Hill, and for adults living with Duchenne as well as carriers. And while we work, individuals in the Duchenne community break barriers every single day. This September, we’re sharing these stories and encouraging families and friends to take action with us.”
If you would like to learn more about World Duchenne Awareness Day or Duchenne Action Month, including details on how you can participate, please visit the PPMD website.
About Parent Project Muscular Dystrophy
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.
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SOURCE Parent Project Muscular Dystrophy (PPMD)