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.
Cure Sanfilippo conducts and funds promising research, projects, and clinical trials. Learn more about our research efforts.
Together, a cure comes sooner. We collaborate with families, researchers, academic institutions, regulators, and bio-technology companies.
The more people who know about Sanfilippo, the more progress that happens to find a cure. So we help elevate awareness of Sanfilippo.
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.
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
Opening ADVANCE 2023, Glenn O'Neill, President & Co-Founder of Cure Sanfilippo Foundation, shared the following remarks with the audience of more than 370 parents, researchers, clinicians, therapists, educators, and more, reviewing the 10-years of the Foundation...
Recorded Sessions Available for On-Demand Replay The virtual ADVANCE 2023, a Sanfilippo Community Conference, held August 29-30, 2023, is a forum for education, scientific presentations, networking, and community building that brought together families and caregivers,...
Hear directly from the Hooks family – Parents Cory and Jamie, Trenton (age 17, Type A), and siblings Treyven and Tyson!Awareness is a huge part of fighting Sanfilippo Syndrome. With awareness comes caring and understanding, which can lead to support and donations for...
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 June 2023 to July...
Hear directly from the Nevins family – Parents Shannon and Jerad, Nathan (age 7, Type A), and sister Kennedy!Awareness is a huge part of fighting Sanfilippo Syndrome. With awareness comes caring and understanding, which can lead to support and donations for research...
Justin Strong, father of Ryler, who was diagnosed with Sanfilippo Syndrome in 2021, graduated from Ocasta High School in 2022. Learning of his son's diagnosis and the need for funding to support research to cure children like Ryler, the Ocasta Junior/Senior...
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,...