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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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Logan Pacl Gets Served
Turning 18 is a milestone for any teen—but for families of children with rare or special needs, it comes with unique legal and practical challenges - including Guardianship. 
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Sandy Reamer is a Badass
Sandy Reamer has spent more than 21 years as full-time caretaker for her son, Austin, who lives with Sanfilippo syndrome. Along the way, she's become an advocate and a source of encouragement for families walking the same road. 
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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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Changing the Odds
How Illinois parents Kyle and Megan Kempf are helping unite families—and accelerate hope—for children with Sanfilippo Syndrome 
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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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