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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 & More
Contribute to the long term goal of saving all our children
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The Latest
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Bouncing back (stronger) from trauma
We can all learn something from cancer survivor, advocate, writer and educator Tara Shuman. Hear her story. 
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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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"Does my child have Sanfilippo Syndrome?"
Three Sanfilippo moms came together to create a private Facebook group to help concerned parents find answers for their kids 
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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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Sanfilippo angel mom was asked a jarring question. Here's her reply
"What do Sanfilippo kids die from exactly?" As Stacey Montgomery explains, it's complicated. 
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