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 the development of treatments and a cure for Sanfilippo Syndrome so parents can dream of their children’s futures again.

Help save children.
VIDEO: One Family’s Sanfilippo Story
And the reality for every family living with Sanfilippo Syndrome.
Cure Sanfilippo Foundation logo
We are writing the next chapter for 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.

Green arrow bullet Millions raised since 2013

Green arrow bullet 15,000 children globally

Green arrow bullet 50+ research projects funded

Green arrow bullet Engaging families around the world

Green arrow bullet 4 clinical trials funded

Green arrow bullet Medical & scientific expertise
WHAT IS
SANFILIPPO

MEET THE
FAMILIES

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Accelerating research to find a cure for children with Sanfilippo Syndrome

Give children with Sanfilippo a chance at life. Let parents watch their children grow up.
A cure can’t wait.

Every parent dreams about their child’s future and watching it unfold.

Sanfilippo Syndrome
takes that all away.

Sanfilippo Syndrome is a rare, terminal, neurodegenerative disease. It causes children to lose all the skills they’ve gained, to suffer seizures and dementia, to experience pain and suffering, and then die. 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.

Help save children

VIDEO: One family’s story.
Every Sanfilippo family’s reality.

Has your child been diagnosed with Sanfilippo?
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

HOW YOU CAN HELP

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

YOUR SUPPORT HELPS FIND A CURE
HOW YOU CAN HELP

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

MEET THE
FAMILIES
    OUR MISSION

    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.

    LATEST NEWS

    5 Things to Know | Sanfilippo Community Digest | Oct. 14, 2026

    “5 Things to Know” is a 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. ADVANCE 2026...

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    ADVANCE 2026 conference recordings available

    Recorded Sessions Available for On-Demand Replay The world of Sanfilippo Syndrome is changing fast. New research. New ideas. New possibilities. ADVANCE 2026 is your chance to get caught up on what’s happening and focus in on the topics you want to know more about. The...

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