Leading Duchenne Organization Encourages Families to
Join the Fight to End Duchenne Muscular Dystrophy
WASHINGTON, Sept. 1, 2024 /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 celebrate World Duchenne Awareness Day on September 7. This global initiative, spearheaded by the World Duchenne Organization, aims to raise awareness about Duchenne and Becker muscular dystrophy and has gained historic significance with the United Nations’ official recognition of the day.
World Duchenne Awareness Day has continued to grow since its inception in 2014. This year, the UN’s official recognition of September 7 as World Duchenne Awareness Day highlights a global commitment to Duchenne advocacy. This milestone is a testament to the collaborative efforts of advocates, patient organizations, and key individuals, including H.E. Mr. Tareq Albanai, Kuwait’s Permanent Representative to the United Nations, and his wife Rasha Alnaibari, a dedicated member of PPMD’s Board of Directors. Their advocacy, driven by their personal connection through their son Bazi, has been pivotal in achieving this recognition. Learn more by visiting the UN’s World Duchenne Awareness Day page, which is available in all six UN official languages.
This year’s theme for World Duchenne Awareness Day is “Raise Your Voice for Duchenne.” With this, PPMD and fellow organizations are encouraging families and friends of the community to join in creating a more inclusive world where people living with Duchenne and Becker are empowered to thrive. Activities will include local landmarks illuminated in red, cities issuing proclamations, and families sharing their stories on social media to bring attention to Duchenne.
Building on this momentum, 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.
In addition to these efforts, PPMD will host a special webinar titled, “PPMD Advocacy: Raising Our Voices in 2024 and Beyond,” on September 5th. This inspiring webinar will reflect on PPMD’s advocacy efforts in its 30th anniversary year, highlighting key policy achievements and ongoing work to promote rights, inclusion, and well-being for those with Duchenne and Becker.
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 evolution 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 a crucial time for our community to enhance awareness, advocate for change, and raise funds to help support the fight for every future.”
Furlong continues, “This year, we celebrate the collective power of voices coming together to advocate for Duchenne. The theme ‘Raise Your Voice for Duchenne’ underscores our commitment to amplifying the voices of those affected by Duchenne and Becker. As we work to enhance inclusion and well-being for all, we invite everyone to join us in raising their voices and advocating for a more inclusive world where people living with disabilities are empowered to thrive.”
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 PPMD’s website.
ABOUT PARENT PROJECT MUSCULAR DYSTROPHY
Duchenne is a 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 eight 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)
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