Galactosemia is a rare metabolic disorder that requires lifelong management, and the journey for families can be challenging and uncertain. My son, Joseph, was born in March 2012 and shortly after was diagnosed with Galactosemia. Like many families, our start was rough—at just nine days old, Joseph became septic and developed meningitis. After many rounds of antibiotics and intensive care, he recovered, but was left with unilateral hearing loss.

Today, Joseph is doing well, and he is fortunate to have access to a promising clinical drug through an expanded access program, but currently, there is no FDA-approved treatment for Galactosemia. While he is thriving in many ways, there are still challenges, and the future remains uncertain.

This is why we fundraise. Your support helps drive critical research, develop treatments, and provide essential resources for families navigating this condition. Together, we can help ensure that children like Joseph have brighter, healthier futures.

Glow for Galactosemia- Silent Disco

Benefiting the Galactosemia Foundation