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Welcome to a support and self-empowerment community focused on the families of children with Sanfilippo Syndrome. Whether you are seeking information, support or a connection, we can all learn from each other’s experiences. Individually we are isolated families fighting a terrible and rare disease, but together we are a force of nature.
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"Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has."
~ MARGARET MEAD ~
~ MARGARET MEAD ~
Videos & More
Learn about this disease and make yourself a stronger advocate for our children
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Videos & MoreHelp make the entire community stronger by sharing your stories and your skills
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Videos & MoreContribute to the long term goal of saving all our children
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The Latest
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Sanfilippo survey data needed!!
Sanfilippo mom Jill Wood needs you to fill out an important survey ASAP. Innocent children's lives are depending on it. 
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Dads supporting dads - Welcome to #RareDads
Sanfilippo dads across the world have come together to launch the #RareDads Roundtables. We're just getting started, and we want others to join us. 
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Make-A-Wish Disney magic
Two Make-A-Wish trips. Two Sanfilippo kids. One unforgettable connection for two families. 
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Eye-gaze technology for non-verbal Sanfilippo kid?
Wisconsin mom Brittany Lagarde shares her family's experience 
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Climbing for a cure
"At the time, I thought to myself, 'If I could actually do this, I bet I could get a lot of people to support the cause'. And it worked". 
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