Every parent dreams about their kid’s future and watching it unfold.
Sanfilippo Syndrome takes all that away, replacing it with pain and suffering. The child experiences severe dementia and dies in their mid-teens. All before their parents eyes.
Cure Sanfilippo Foundation architects and funds cutting-edge research to accelerate discovery of a treatment or cure for Sanfilippo Syndrome so parents can dream of their children’s futures again.

$20 million raised since 2013


110+ partner families globally


Every parent dreams about their child’s future and watching it unfold.
Sanfilippo Syndrome takes that all away.
Help save children

With your support, we are writing the next chapter on Sanfilippo Syndrome.
The chapter of the cure for this childhood dementia.
Every project we architect or fund gets families closer to a cure in this lifetime.
-> $20 million raised since 2013
-> Medical & scientific expertise
-> 35+ research projects funded
-> Multiple clinical trials funded
By advocating for and funding research directed towards a cure and treatment options.
The Foundation’s focus in 2023: funding the most-promising research and elevating the voices of caregivers in pursuit of a cure for Sanfilippo Syndrome.
Fundraising is critical fuel for these goals. Our goal is to raise $2,500,000 in 2023. We need your help to get there. Every single donation makes a difference.
Foundation’s Cara O’Neill named to FDA and CTTI Patient Engagement Collaborative (PEC)
Jan 10, 2023
Dr. Cara O'Neill, the Foundation's co-founder and Chief Science Officer, has been selected by the U.S. Food and Drug Administration (FDA) and the Clinical Trials Transformation Initiative (CTTI) as a representative for the Patient Engagement Collaborative (PEC)....
Recent scientific articles relevant to Sanfilippo Syndrome: October-December 2022, digest
Jan 5, 2023
Every week thousands of scientific articles on various topics are published. Here are some recent articles and abstracts that are relevant to understanding, managing, and/or treating Sanfilippo Syndrome (mucopolysaccharidosis III or MPS III) from October 2022 to...
A Natural History Study of Sanfilippo Syndrome Type D (MPSIIID) | Type IIID | Observational Study | Phoenix Nest
Dec 13, 2022
Page last updated: December 13, 2022 For web accessibility options: Click/tap the floating blue icon on the right. Trial Information Phoenix Nest and National Institute of Neurological Disorders and Stroke (NINDS) are conducting a observational research study, which...
@curesanfilippo I believe. In honor of my daughter Eliza & all children with Sanfilippo ❤ #tiktokforacure #workyourmagic #curesanfilippo ♬ original sound - curesanfilippo