Cure Sanfilippo Foundation is funding a two-year project by Neta Shlezinger, PhD, at the Koret School of Veterinary Medicine in Israel, in collaboration with Dr. Annick Raas-Rothschild, Associate Professor and Director of Rare Diseases Institute at Sheba Institute for...
Scientific News
Foundation now accepting LOIs for Sanfilippo research funding
Cure Sanfilippo Foundation is now accepting Letters of Intent (LOI) for innovative research into Sanfilippo Syndrome (MPS III). Cure Sanfilippo Foundation seeks to support research that fills critical gaps in current knowledge across basic science, clinical care, and...
Foundation’s Co-Founder & Chief Science Officer Cara O’Neill recognized as Rare Leader
Dr. Cara O'Neill, Co-Founder and Chief Science Officer of Cure Sanfilippo Foundation, was recently recognized by Global Genes as a Rare Leader. In an in-depth interview, O'Neill shared her background, how she became involved in Sanfilippo Syndrome and rare diseases,...
2nd annual World Sanfilippo Awareness Day to be celebrated Nov. 16, 2020
People around the world are making a significant difference for children with Sanfilippo Syndrome. Each day, an effective, approved, and available treatment for Sanfilippo Syndrome is closer. Each year, World Sanfilippo Awareness Day is celebrated by this community...
Foundation crosses $1 million mark in 2020 fundraising
Cure Sanfilippo Foundation supporters have raised more than $1 million in 2020 so far, to fund research into Sanfilippo Syndrome! "When the World shut down in March, we knew we couldn't stop the time-sensitive mission to help children. But we didn't know what the...
Medical records of Sanfilippo children can accelerate discovery of a treatment
Parents and caregivers of children with Sanfilippo Syndrome have the opportunity to help accelerate drug development for the disease right from their homes. AllStripes, formerly RDMD, is a research platform dedicated to rare diseases that enables patients to...
Global Genes’ RARE Cast podcast interviews Cara O’Neill
Dr. Cara O'Neill, Chief Science Officer for Cure Sanfilippo Foundation, discussed her own journey with Sanfilippo Syndrome, issues causing diagnostic delay, and how the Foundation is helping advance science for a cure in an interview as the Aug. 28 guest on Global...
VIDEO: What Craig & Sara want to say to you
https://youtu.be/dOxewsJad4w This is Craig and Sara. Their beautiful son Carson is participating in a new clinical trial that your generosity made happen. This is their message to you. Your support enabled Cure Sanfilippo Foundation to build this clinical trial...
Cure Sanfilippo joins in calling for addition to Cures 2.0 legislation
Cure Sanfilippo Foundation is one of 46 patient advocacy organizations to sign-on to a letter asking U.S. Representatives Diana DeGette (D-Colorado) and Fred Upton (R-Michigan) to include H.R. 4144 - Ending the Diagnostic Odyssey Act in the Cures 2.0 legislation. The...