We Are Working To Cure Sanfilippo Syndrome.

Our mission is simple:

To advocate for and fund research directed towards a cure and treatment options for patients with Sanfilippo Syndrome.

About the Foundation

Explore how the Foundation began, who leads it, the families that partner with it, and the impact it has had since it was founded.

Accelerate Research

Cure Sanfilippo conducts and funds promising research, projects, and clinical trials. Learn more about our research efforts.

Drive Collaboration

Together, a cure comes sooner. We collaborate with families, researchers, academic institutions, regulators, and bio-technology companies.

Increase Awareness

The more people who know about Sanfilippo, the more progress that happens to find a cure. So we help elevate awareness of Sanfilippo.

Raise Funds

We set ambitious annual fundraising goals in order to fund research for every kind of Sanfilippo and to dictate and accelerate the pace of research.

Support/Unite Families

Cure Sanfilippo connects families globally with the latest information on current research, as well as provides support for fundraising and caring for their children.

When our daughter Eliza was diagnosed with Sanfilippo Syndrome at the age of four, we decided we had to do everything possible to find a cure. It was the motivation that any parent can relate to as you will “got to the ends of the earth” for your child. So, we created Cure Sanfilippo Foundation in order to pursue every avenue to change the fate for every Sanfilippo child, not just our daughter. TIME is not on these children’s side, so the URGENCY is paramount. Cure Sanfilippo Foundation has come to represent a collection of Sanfilippo families (more than 80 globally and growing) and friends/supporters from across the country fighting to save our children under a single umbrella. There’s HOPE for a cure, and that HOPE comes from the ACTION that is being taken from supporters like you, to further this mission to save children, and cure Sanfilippo.
Glenn and Cara O’Neill

Parents of Eliza, Co-Founders of Cure Sanfilippo Foundation

Cure Sanfilippo Foundation is a 501(c)3 Not-For-Profit Organization

All net funding goes to the urgent mission to advance treatment options to treat children with Sanfilippo.

This is led by proactive families of children with Sanfilippo Syndrome and their supporters, who work tirelessly to change the fate and future for these children.

Donations may be tax-deductible.

Latest Foundation News

Could your daily steps help save children’s lives? 👟

You take thousands of steps every day. And those daily steps can help save children from Sanfilippo Syndrome and keep them walking, running, and smiling. Just by going about your typical day. Step Up To Cure Sanfilippo is a one-day steps fundraiser where people...

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Global Genes’ RARE Cast podcast interviews Cara O’Neill

Dr. Cara O'Neill, Chief Science Officer for Cure Sanfilippo Foundation, discussed her own journey with Sanfilippo Syndrome, issues causing diagnostic delay, and how the Foundation is helping advance science for a cure in an interview as the Aug. 28 guest on Global...

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A year after going public with son’s Sanfilippo diagnosis

A year ago, the parents of Connor Dobbyn decided to go public with his diagnosis of Sanfilippo Syndrome in the hopes of helping raise critical funding for a clinical trial that could save his life. It wasn't an easy decision and one year to the day, Connor's mom...

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