Raising Awareness

Sanfilippo Is a Rare Disease, But There Is Greater Awareness Than Ever.

The compassion of people is truly amazing. In five years, more than $8 million has been donated to the Foundation.

All of it coming from individuals who heard the stories of Sanfilippo families and made the selfless choice to help our kids have a chance at life. More than 40,000 strangers have stepped up to help find a cure for Sanfilippo Syndrome.

We work to keep elevating awareness by constantly telling the story. For one Sanfilippo family’s story is the reality for all of us.

Thought-Leadership Projects

Curing Sanfilippo is our ultimate goal, but your support also allows us to play a critical roll in influencing the road that leads there. Learn more about the Foundation’s thought-leadership projects.

Collaborations

Curing Sanfilippo is our ultimate goal, but your support also allows us to play a critical roll in influencing the road that leads there. Learn more about the Foundation’s collaborative mindset.

Sanfilippo Syndrome In The News

ADVANCE 2023 recordings; watch at your convenience

Recorded Sessions Available for On-Demand Replay The virtual ADVANCE 2023, a Sanfilippo Community Conference, held August 29-30, 2023, is a forum for education, scientific presentations, networking, and community building that brought together families and caregivers,...

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Family Friday 2023: The Hooks Family

Hear directly from the Hooks family – Parents Cory and Jamie, Trenton (age 17, Type A), and siblings Treyven and Tyson!Awareness is a huge part of fighting Sanfilippo Syndrome. With awareness comes caring and understanding, which can lead to support and donations for...

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Family Friday 2023: The Nevins Family

Hear directly from the Nevins family – Parents Shannon and Jerad, Nathan (age 7, Type A), and sister Kennedy!Awareness is a huge part of fighting Sanfilippo Syndrome. With awareness comes caring and understanding, which can lead to support and donations for research...

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Family Friday 2023: The Funderburk Family

Hear directly from the Funderburk family – Parents Josh and Jess, Jolene (age 5, Type A), and brother Wyatt!Awareness is a huge part of fighting Sanfilippo Syndrome. With awareness comes caring and understanding, which can lead to support and donations for research...

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