For Elle. For Families. For a Cure.

The Elizabeth Sophia Foundation exists to advance research, support families, increase awareness, and advocate for children affected by Sanfilippo syndrome and related rare neurodegenerative diseases.

Our Story

Elizabeth Sophia Foundation was born from love, urgency, and the reality that families facing rare diseases like Sanfilippo syndrome cannot afford to wait. Like so many children with Sanfilippo, our daughter Elle is not defined by a single diagnosis—she faces a complex web of challenges, including autism, epilepsy, hearing loss, speech impairment, sensory needs, and intellectual disability.

These are not isolated conditions; they shape every moment of daily life and require constant care, therapy, and support. We created Elizabeth Sophia Foundation to stand in the gap—for families navigating overwhelming medical, developmental, and financial burdens today, while also fighting relentlessly for tomorrow.

Our mission is to support the whole child and the whole family—funding critical therapies and care, raising awareness, and advancing research that brings us closer to meaningful treatments and, one day, a cure.