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 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.
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
Blood-based biomarkers for Sanfilippo syndrome progression and treatment
Grant Summary Institution: University of California, Los Angeles Primary Investigator: Gal Bitan, Ph.D./Professor of Neurology Duration: 24 months Start Date: September 2021 Type of Sanfilippo studied: Types A, B, C, and D Types of Sanfilippo that could benefit: Types...
Natural History Study of Participants With Sanfilippo Syndrome Type IIIC (MPSIIIC) | Type IIIC | Observational Study | Hospices Civils De Lyon
Page last updated: April 24, 2023 For web accessibility options: Click/tap the floating blue icon on the right.Trial Information Hospices Civils De Lyon in France is conducting a single-site natural history study of patients with Sanfilippo Syndrome Type C (MPS IIIC...
Tips for Make-A-Wish trips to Disney World, from a Sanfilippo family
Many families choose a trip to Disney as their Make-A-Wish. While exciting, a Make-A-Wish trip to Disney can also be overwhelming for a family with a child with special needs to plan for. Thankfully, here are some tips for Make-A-Wish trips to Disney you can use to...
O’Neill joins other rare disease advocates for meeting with FDA Commissioner, Directors
Last week, Cure Sanfilippo Foundation Chief Science Officer and Co-Founder Cara O'Neill was privileged to be among a group of fellow ultra rare disease advocates meeting with the FDA Commissioner Robert Califf, MD, and Center Directors. The group presented the urgent...
Family Friday 2023: The Ulrich Family
Hear directly from the Ulrich family – Jericho, Christin, Elise, and Veda!Awareness is a huge part of fighting Sanfilippo Syndrome. With awareness comes caring and understanding, which can lead to support and donations for research that can give children with...
Upcoming Events
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