On Friday, September 5th, 2025 I had the honor of speaking at the United Nations to raise awareness and turn hope into action for World Duchenne Awareness Day.
The Permanent Representative of the State of Kuwait to the United Nations, Ambassador Tareq Albanai, hosted the meeting. Ambassador Albanai’s son lives with Duchenne, and he and his wife, Rasha, understand that progress in rare disease needs a global coalition—so they are building just that.
During the meeting, we heard remarks from the Director General of the World Health Organization, as well as the Deputy-Secretary General of the United Nations and Steve Way, a fellow patient advocate and actor, best known for his role on the Hulu series, Ramy. All shared the same message: the world needs us all to come together to work on shared goals. Life is not about what divides us, but instead about what brings us together.
I spoke about adult life with muscular dystrophy, about the need for society to keep pushing for equal access to care. I carried a message from the adult Duchenne and Becker community that we must not be forgotten or abandoned by the world at large. I spoke from the heart, thinking about all the individuals and families that have come before me in order for our community to reach a moment where Duchenne and Becker appear on a world stage in front of delegates representing countries from all over the world.
Anyone and everyone living with muscular dystrophy, as well as those who have passed, were with me in these moments. To those individuals: I stand on your shoulders and hold sacred our mission of turning hope into action.
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