Hello! My name is Amanda, and I am deeply honored to be part of the LMBRD2 Association. The association’s mission to advocate for and connect families affected by LMBRD2 is one that is incredibly close to my heart. My daughter, Isabella, was diagnosed shortly after her second birthday, and through her journey she has taught me the profound importance of advocacy, connection, and community.

I am passionate about raising awareness for LMBRD2, because awareness leads to understanding—and understanding creates more opportunities for our children to thrive. Through my involvement with the association, I hope to support and expand its efforts to connect families with trusted resources, information, and one another. I know firsthand how overwhelming it can be to navigate a rare genetic condition, and no family should have to do it alone.

I truly believe that together, through community and shared support, we can help create a world where children like my Isabella can live full, joyful lives and have the resources they deserve.