Advocating for our sons and all the boys affected by Duchenne Muscular Dystrophy is one of the most empowering things I have ever done. There is something incredibly powerful about standing up for those who cannot always fight for themselves, about using our voices to make a difference in the rare disease community.
One of the most impactful experiences in this journey has been going to the Senate and House representatives’ offices—sitting face to face with lawmakers, sharing our stories, and realizing that they truly care. Those moments, those successful meetings where we feel heard and understood, are what fuel me when the weight of this battle starts to feel overwhelming.
Advocacy is not easy. There are days when the exhaustion creeps in, when the fight feels never-ending. But then I remember why we do this. Our boys are strong—so much stronger than this disease. And while they fight their battle every single day, we are here to fight alongside them, ensuring that their voices are heard, that research advances, and that policies change for the better.
This is more than just a cause—it’s a mission, a movement, a relentless pursuit of hope. We will not back down. We will not stop pushing for change. Because every conversation, every meeting, every step forward brings us closer to a future where Duchenne no longer defines our children’s lives.
Not today, Duchenne. Not today!
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