Every parent dreams about their kid’s future and watching it unfold.
Sanfilippo Syndrome takes all that away, replacing it with pain and suffering. The child experiences severe dementia and dies in their mid-teens. All before their parents eyes.
Cure Sanfilippo Foundation architects and funds cutting-edge research to accelerate discovery of a treatment or cure for Sanfilippo Syndrome so parents can dream of their children’s futures again.
And the reality for every family living with Sanfilippo Syndrome.
Million raised since 2013
15,000 children globally 50+ research projects funded
Engaging families around the world
3 clinical trials funded Medical & scientific expertise
SANFILIPPO
MEET THE
FAMILIES
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Accelerating research to find a cure for children with Sanfilippo Syndrome
Every parent dreams about their child’s future and watching it unfold.
Sanfilippo Syndrome
takes that all away.
Cure Sanfilippo Foundation architects and funds cutting-edge research to accelerate discovery of a treatment or cure for Sanfilippo Syndrome, so parents can dream of their children’s futures again.
Help save children
VIDEO: One family’s story.
Every Sanfilippo family’s reality.
We are here to help.
With your support, we are writing the next chapter on Sanfilippo Syndrome.
The chapter of the cure for this childhood dementia.
Every project we architect or fund gets families closer to a cure in this lifetime.
-> $20 million raised since 2013
-> Medical & scientific expertise
-> 50+ research projects funded
-> Multiple clinical trials funded
DONATE
Find the
donation option
that fits you
FUNDRAISE
Easily create
and host your own
online fundraiser
TELL OTHERS
Make a difference
by telling others
about Sanfilippo
DONATE
Find the
donation option
that fits you
FUNDRAISE
Easily create
and host your own
online fundraiser
TELL OTHERS
Make a difference
by telling others
about Sanfilippo
FAMILIES
Cure Sanfilippo Foundation’s mission is to accelerate scientific development and access to a cure or therapeutic options for all affected by Sanfilippo Syndrome, to drive advocacy to improve care and outcomes, and to empower families with information, guidance, and support to navigate the journey.
2026 Hands-on Workshop: “Does my insurance cover this?”
“Does my insurance cover this?” This is a common question Sanfilippo families face. If combing through your insurance policy feels like reading a foreign language, Cure Sanfilippo Foundation is here to help! In this small group, hands-on workshop, we dive into the...
5 Things to Know | Sanfilippo Community Digest | Aug. 24, 2026
“5 Things to Know” is a new, quick digest from Cure Sanfilippo Foundation of five things especially relevant to the Sanfilippo Syndrome community. We are going to send these regularly to keep you updated and put information and resources at your fingertips.1. Latest...
What Sanfilippo Families Need to Know: New Medicaid Work Requirements
Starting January 1, 2027, most states must require certain adult Medicaid enrollees to work, study, or volunteer 80 hours a month to keep their coverage. This comes from a new federal rule (CMS-2454-IFC) issued June 1, 2026. Many parents and caregivers of children...
