$432,000 donated so far in 2023 to help children with Sanfilippo Syndrome

March 30, 2023


The Foundation is thrilled to announce that, together, generous donors have helped raise $432,000 so far this year to help children with Sanfilippo Syndrome through funding research and clinical trials!

There are two reasons this is such a moment to celebrate.

1) In the coming weeks, we are excited to share details of multiple research projects the Foundation has just approved. And the continued generous donations this year ensure the Foundation will be able to keep funding even more research projects. Projects that build on existing ideas, get clinical trials up and running, and explore totally new and promising ideas. Each and every research avenue and stage must be explored.

That’s what our “relentless pursuit” of a therapy means.

2) Just as important is reflecting and celebrating the “together” part. Individually raising millions for research each year seems simply impossible. But together we are making that happen.

Together, we are ensuring there is consistent and focused attention on research exclusively for Sanfilippo. Together, we have helped make more clinical trials for Sanfilippo happen in the past 8 years than ever before. Together, we are refusing to accept “There’s nothing to do but take your child home and love them.” Together, we are fighting for our children and those to come.

Because we believe that someday, like in so many other diseases, our funding of the remarkable research minds working on Sanfilippo will succeed in giving children a different future, one with more good days.

We don’t have angel donors dropping hundreds of thousands of dollars to help our disease. The millions you help raise each year to cure Sanfilippo Syndrome come from thousands and thousands of small actions, that together aggregate into the ability to fund and direct research to help these children. Every donation, no matter the amount. Every post by a family, sharing their story. Every fundraiser, no matter the size. It all adds up.

Thank you to every one of you. To every family. To every person who loves and supports these families. To the communities that rally to help these families and this cause. To every donor who has made the choice to help our children. Thank you.

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