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.

Get To Know Us

Accelerate Research

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

Research We Fund

Drive Collaboration

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

Ways We Collaborate

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.

Elevating Awareness

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.

How We Raise Funds

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.

Support For Families
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

“Light Up the Night” on May 15 to honor MPS Awareness Day

May 11, 2020

"LIGHT UP THE NIGHT" for MPS on Friday, May 15. Friday is a big day in the MPS community every year. It is International MPS Awareness Day. This Friday, May 15, when it gets dark, families, friends, and supporters will light candles outside their homes -- in their...

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Combined response to FDA draft guidance on drug development

May 6, 2020

On May 5, Cure Sanfilippo Foundation submitted the combined Sanfilippo Patient Advocacy Group Response to the U.S. Food And Drug Administration's (FDA) February draft guidance regarding the development of drugs to treat MPS III (Sanfilippo Syndrome). The 39-page...

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Sanfilippo caregivers invited to take RDCRN coronavirus survey

May 4, 2020

The novel coronavirus pandemic can have a serious impact on people with rare diseases and their families. Yet, not much is known about it. The Rare Diseases Clinical Research Network (RDCRN), which is funded by the National Institutes of Health (NIH), is conducting a...

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A Cure Can’t Wait – GivingTuesdayNow

Apr 30, 2020

Life looks quite unfamiliar for all of us. But we take heart because one thing hasn’t changed: people are still thinking of others, finding ways to make a difference. Which is why families with Sanfilippo Syndrome are asking for help. Right now.  Like everything else,...

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