Sanfilippo Syndrome is felt by the entire family, not just the child.

After a diagnosis of Sanfilippo Syndrome, life is never the same for the families.

But a cure will change everything. For these children. For their families. Forever.

Meet The Kids And Their Families

These children and their families are sharing their stories, in their words. What it felt like the day they learned their child was diagnosed with Sanfilippo Syndrome. What it feels like to live with Sanfilippo every day since. What it feels like to think about what tomorrow might bring.

If Your Child Has Been Diagnosed.

You aren’t alone in your journey with Sanfilippo Syndrome. We and the other Sanfilippo families around the world are with you. Here for you. Whether your child was recently diagnosed or Sanfilippo has been a part of your life for years.

Working Together With Sanfilippo Families Globally

All Sanfilippo families are welcome to join the Foundation’s efforts to cure this disease. We are open to you if you’re interested in more information about Sanfilippo, more details about where the most promising research stands, best practices we’ve experienced, to participate in fundraisers, or even formally roll up under our Foundation.