Supporting Families

Sanfilippo syndrome doesn’t just affect the child — it transforms every aspect of family life. The medical, financial, and emotional weight of caring for a child with Sanfilippo is immense and unrelenting. The Elizabeth Sophia Foundation exists, in part, to stand alongside these families.

What Families Face

Families navigating Sanfilippo often face:

• Overwhelming medical, therapy, and care costs
• Difficulty accessing specialized care and equipment
• Isolation from a lack of awareness and understanding
• Constant uncertainty about disease progression
• The emotional toll of watching a child’s skills and abilities decline

How We Help

Our family support mission is evolving as we grow. Our goals include connecting families with one another and with the latest research, and working toward direct financial support for families when our resources allow.

We are also building a community — because no family should feel alone in this fight.

Get Connected

If you are a family affected by Sanfilippo syndrome, we want to hear from you. Please reach out — we are actively building a network of families, particularly those with Type C, to share information and support one another on this journey.