When a child is diagnosed with a rare disease, the path forward often feels hopeless, isolated, and profoundly uncertain.
Be Visible was founded out of this deeply personal journey.
After being diagnosed with STXBP1 the lives of our twins and family would change in a way no one can plan for. Rather than stepping back into the shadows of an unfamiliar diagnosis, our twins chose a different path for our family. Every single day, they wake up determined to make progress and engage with the world. They face their challenges head-on, sharing their joy, their resilience, and their strength with those around them.
They inspired our name, our purpose, and the symbol at the heart of our mission: two chameleons.
By nature, chameleons are expected to blend in and adapt to surroundings built for everyone else such you hardly know they are there. But our twins—and every individual living with a rare condition—deserve so much more than simply surviving in a world that doesn't acknowledge them.
They choose to stand out, be seen, and be known.To BeVisible.
We believe that when our children are visible, something powerful happens: the world begins to adapt to them. Empathy replaces hesitation, community replaces isolation, and support replaces barriers.
We share our story openly so that the families who come after us do not have to navigate the unknown alone.
BeVisible exists to ensure there are no hidden causes. We are bringing rare diseases out of the shadows, building a world that embraces every unique journey, and funding the critical research needed to accelerate a cure—for STXBP1 and all rare conditions.
