Damian's Project

We create inclusive community and support families affected by rare disease

Vision

To contribute to a world without muscular dystrophy and a future in which all people can meet their wellbeing needs regardless of financial, social or physical barriers.

Values

Access

Removing barriers – whether physical, social or financial – faced when accessing wellbeing resources and understanding DMD disability issues is central to our work.

Learning

We come to this work with the mindset that we are all learners and we are all teachers – we hope to offer learning about the issues fundamental to our mission and to continue to learn from the immense knowledge of our community and the land we are settled on in a collaborative, reciprocal process.

Community

Community is where it all starts for us — we aim to cultivate a community that serves all its members and be continuously responsive to the needs and interests of the people we serve. We value collaboration and see our community as partners in the co-creation of our programs and initiatives.

About Damian

Damian was diagnosed with Duchenne muscular dystrophy when he was 8 years old. It was difficult to adjust to such grievous prognosis. My family struggled to understand of his diagnosis on our daily lives and long-term plans.
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Though receiving such a news would be challenging for anyone, Damian didn’t let his physical limitations stop him from exploring his many interests. He discovered love for outer space, drawing, marine life, high-speed trains, and science. When prompted, he could talk about his favorite topics for hours at a time. Damian’s curious personality and inquisitive nature made him quick-witted, with a snappy comeback always at the tip of his tongue.

Damian was passionate about making positive change in the world and dreamed of creating a community that welcomed everyone. He understood how disability isolates people and as someone who was also neurodivergent, he was well aware of the wide array of wellbeing challenges today’s communities face.
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He dreamed of creating a community built on support and free of judgment. A space that was intentionally safe for all bodies, abilities and lived experiences and where no one was forced to disclose their disability or the barriers they faced when it came to wellbeing.
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In the summer of 2023, Damian passed away in his sleep. Even though Damian lost his battle with DMD, the fight isn’t over. Damian’s spirit lives on through Damian's Project which will continue its mission to support those affected by DMD, continue the search for a cure, and create inclusive wellbeing community. We aim to honor Damian’s legacy by adopting his indomitable spirit and immense courage, keeping his legacy alive in our future endeavors.