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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

Family Friday Blog: The Lagarde Family

Get to know the Lagarde family – Sam, Brittany, Sawyer, and Zion! Find out what the past year has been like in their lives with this week’s Family Friday. Get a glimpse into living with Sanfilippo Syndrome through the Lagardes' honest and insightful perspective. The...

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Family Friday Blog: The Sarkar Family

Get to know the Sarkar family – Samir, Jen, Sophia, and Carter! Find out what the past year has been like in their lives with this week’s Family Friday. Get a glimpse into living with Sanfilippo Syndrome through the Sarkars' honest and insightful perspective. The...

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Family Friday Blog: The Hyder Family

Get to know the Hyder family – Jonathon, Nicole, Brayden, Gage, and Rylan! Find out what the past year has been like in their lives with this week’s Family Friday. Get a glimpse into living with Sanfilippo Syndrome through the Hyder's honest and insightful...

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Family Friday Blog: The Byers Family

Get to know the Byers family – Tim, Valerie, Will, and Samantha! Find out what the past year has been like in their lives with this week’s Family Friday. Every week, a partner-family shares what’s been happening in their lives over the past year. You’ll get a glimpse...

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