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
Ultragenyx is conducting a gene therapy clinical trial for Sanfilippo syndrome type A. This trial has been going on for many years and, as a community, we have been anticipating updates on the interim outcomes of this trial. Ultragenyx has provided a letter to the...
A multi-year study, led by Coy Heldermon, MD, PhD, at University of Florida and co-funded by Cure Sanfilippo Foundation and Sanfilippo Children’s Foundation (Australia), into whether stem cell therapy could restore damage cause by Sanfilippo Syndrome is now complete....
Today, we launch the International Sanfilippo Syndrome Alliance (ISSA), a global collaboration committed to the rapid delivery of benefits and solutions for individuals with Sanfilippo syndrome and their families. The founding members of the Alliance are 11...
Sanfilippo Syndrome involves the accumulation of heparan sulfate sulphate in the body, resulting in progressive mental and physical deterioration. One therapeutic approach under investigation involves substrate reduction therapy (SRT), which aims to reduce the initial...
Special Books by Special Kids (SBSK) is a nonprofit created by a former teacher of students with special needs who uses interviews to create a more inclusive world. "SBSK started when I was a teacher for students with disabilities. Originally intended to be a book...
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