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.
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
A Natural History Study of Patients With Sanfilippo Disease(s) (MPS3) | Type IIIA, IIIB, IIIC, IIID | Observational Study | Lysosomal Center
Page last updated: January 31, 2023 For web accessibility options: Click/tap the floating blue icon on the right.Trial Information Lysosomal and Rare Disorders Research and Treatment Center, Inc. is conducting a natural history study of patients with Sanfilippo...
Muskego Girls Basketball Association donates $33,409 from its 2023 “Swish for A Wish” to Saving Liv
The Milawukee-area community continues to rally around the Stoop family and its fight to save their daughter Olivia. Olivia has Sanfilippo Syndrome, a terminal degenerative disease in children that currently has no FDA-approved therapy or cure. But there is research...
Foundation’s Cara O’Neill named to FDA and CTTI Patient Engagement Collaborative (PEC)
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
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
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...
Upcoming Events
The Woodlands Marathon Charity Challenge | March 5, 2022 – Woodlands, TX — (COPY)
Friends, family, and supporters of Will Byers are again running The Woodlands Marathon 2023 on March 4 in Texas to raise awareness of and funds to cure Sanfilippo Syndrome. And the top fundraisers in the Charity Challenge earn EXTRA funds for their charities!For the...
Krama Era Barn 2023 Dance for Life | March 19, 2023 – Karlstad, Sweden
2023 Dance for Life Take advantage of every moment. Together, we make a difference. Karlstad dansförening presents a charity performance, 2023 Dance for Life, in honor of Krama Era Barn and research to treat Sanfilippo Syndrome on March 19 at the Carlstad Conference...
2023 Super Eliza 5K | April 1, 2023 – Columbia, SC
The South Carolina College of Pharmacy PPAG group is hosting the 9th annual Super Eliza 5K Walk/Run to benefit Cure Sanfilippo Foundation and in honor of Eliza O'Neill on April 1, 2023.Sanfilippo Syndrome is a rapidly degenerative and fatal disease in children, much...
World Sanfilippo Awareness Day – Nov. 16, 2023 | Worldwide
World Sanfilippo Awareness Day is about spreading awareness and sparking conversations globally about Sanfilippo Syndrome, a disease few have heard of. This special day of Awareness is in honor of the children around the world living with Sanfilippo Syndrome today,...