NEW YORK, NY — Parent Project Muscular Dystrophy (PPMD) and the World Duchenne Organization (WDO), along with WDO’s members and affiliates, proudly herald the United Nations marking a momentous milestone for the global rare disease community by officially designating September 7th as World Duchenne Awareness Day (WDAD), set to be observed annually from 2024. This adoption of the resolution “World Duchenne Awareness Day” is the UN’s first formal acknowledgment of a day dedicated to a rare disease. The acknowledgment marks a significant advancement in the ongoing battle against Duchenne.
The adoption of the resolution required a total of 97 votes from Member States. However, as a testament to the collaborative efforts and dedication of advocates, patient organizations, and key individuals, the resolution was adopted by consensus unanimously by all Member States on November 29. The resolution was co-sponsored by 128 Member States, the highest number of co-sponsorships in the 78th session as of today for a resolution tabled by one country.
The success of this initiative can be attributed to the collective efforts of individuals and Duchenne-focused organizations around the world. Spearheading this global movement were H.E. Mr. Tareq Albanai, Kuwait’s Permanent Representative to the United Nations, and his wife Rasha Alnaibari. Their dedication and advocacy stem from personal experience, as their son Bazi lives with Duchenne. Rasha Alnaibari’s role extends beyond her family’s advocacy; she is also a member of the Board of Directors at Parent Project Muscular Dystrophy (PPMD), a U.S. non-profit and member organization of the World Duchenne Organization (WDO). The family’s pledge to raise awareness for Duchenne and advocate for its global recognition has been instrumental in reaching this significant milestone.
Elizabeth Vroom and Nicoletta Madia, the founders of WDAD, express their joy at the official recognition. “A decade ago, this day started as an idea at a kitchen table in Amsterdam. It’s incredible to witness how, with the support and help of the global community, it has evolved into this worldwide movement that is impacting the lives of people living with Duchenne and Becker muscular dystrophy. We remain committed to organizing WDAD and ensuring we continue to raise awareness on specific topics that are important to the community.”
Patient organizations played a crucial role in rallying support for the resolution, employing grassroots tactics like writing to their respective country’s Permanent Representatives to the UN. This approach showcased the Duchenne community’s solidarity and strength.
The foundations for this historic occasion were laid at an event titled “Leaving No One Behind: Igniting Awareness for Duchenne Muscular Dystrophy” hosted by the Permanent Mission of the State of Kuwait in New York City on November 15th. There, Pat Furlong, CEO and President of PPMD, and patient advocate Buddy Cassidy fervently supported the resolution, engaging with United Nations Ambassadors and Diplomats and World Health Organization members. Their advocacy provided valuable insight into both the challenges and potential solutions for the Duchenne community.
Furlong emphasizes the profound impact of the resolution’s passage, expressing, “By fostering a deeper understanding of Duchenne, we can empower communities, healthcare professionals, and policymakers to prioritize early diagnosis, intervention, and support for these individuals and their families.”
As we celebrate this momentous occasion, the World Duchenne Organization and its member organizations eagerly anticipate using this recognition to further educate and engage the global community in combating Duchenne muscular dystrophy.
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