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 three, 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 “go 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.
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
2026 Hands-on Workshop: “Does my insurance cover this?”
“Does my insurance cover this?” This is a common question Sanfilippo families face. If combing through your insurance policy feels like reading a foreign language, Cure Sanfilippo Foundation is here to help! In this small group, hands-on workshop, we dive into the...
5 Things to Know | Sanfilippo Community Digest | Aug. 24, 2026
“5 Things to Know” is a new, quick digest from Cure Sanfilippo Foundation of five things especially relevant to the Sanfilippo Syndrome community. We are going to send these regularly to keep you updated and put information and resources at your fingertips.1. Latest...
What Sanfilippo Families Need to Know: New Medicaid Work Requirements
Starting January 1, 2027, most states must require certain adult Medicaid enrollees to work, study, or volunteer 80 hours a month to keep their coverage. This comes from a new federal rule (CMS-2454-IFC) issued June 1, 2026. Many parents and caregivers of children...
Early Access Treatment With Tralesinidase Alfa in Mucopolysaccharidosis Type IIIB | MPS IIIB | Expanded Access | Spruce Bio
Page last updated: September 4, 2026 For web accessibility options: Click/tap the floating blue icon on the right.Clinical Trial Summary This is an intermediate-size patient population Early Access Program (EAP) providing access to intracerebroventricular (ICV)...
Erin Stoop, PharmD, mom of Olivia, joins Foundation Board of Directors
Erin Stoop, mom to 6-year-old Olivia (Sanfilippo Type B) is the newest addition to Cure Sanfilippo Foundation’s Board of Directors.Erin lives in Wisconsin with her husband Tyler, daughter Liv, and son Liam. Liv was diagnosed with Sanfilippo Syndrome Type B at age 2 in...
Upcoming Events
2026 Miles for His Smiles 5K | Sept. 20, 2026 – Russell, KY
Start the weekend with a little workout that helps children with Sanfilippo Syndrome at the 2026 Miles for His Smiles, Sanfilippo Syndrome Warrior 5K honoring Axel Steele on Saturday, Sept. 20, 2026. The 2026 Miles for His Smiles 5K will be held at the Russell Senior...
2026 Cure Clark 5K Run/Walk | Sept. 26, 2026 – Charlotte, MI
Join the Willmore family at Country Mill Farms for the 2026 Cure Clark 5K Run/Walk to support their son Clark and Cure Sanfilippo Foundation on Sept. 26, 2026! Every step you take will help fund research for a cure for Sanfilippo Syndrome. Whether running, walking, or...
2026 Cure Sanfilippo Foundation Golf Outing | Oct. 2, 2026 – Wilmington, DE
Get a jump start on your weekend and join us for a day of fun at the 2026 Cure Sanfilippo Foundation Golf Outing at Rock Manor Golf Club on Friday, Oct. 2, at 9:00 a.m. The golf tournament will be a 4 person scramble format starting at 9:00 a.m., with registration...