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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

Using TikTok to spread awareness about Sanfilippo Syndrome

Families seizing new opportunity to educate people about Sanfilippo TikTok has become a booming social media platform for people sharing all sorts of content, including families of children with Sanfilippo. Many families have grown significant followings as people...

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Family Friday Blog: The Howard Family

Get to know the Howard family – Chris, Amanda, Abby, Grace, and Blake!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 Howard family's honest and insightful...

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