On Jan. 6, 2020, Ohio Governor Mike DeWine signed a bill that designates November 16 as Sanfilippo Awareness Day in the state. "It's amazing to know that Sanfilippo Syndrome is officially recognized by the state in its revised code and a day dedicated to awareness of...
Press Release
Thankful for you; Looking back at 2020 and ahead into 2021
Our goal at the beginning of the year was to raise $2 million in 2020, to help further research and clinical trials for children with Sanfilippo Syndrome. But when the world shut down in March, it seemed so far away ... and honestly nearly impossible. But time and...
4 ways to make memories this holiday season
It's deep into the holiday season. And while this holiday season is unlike any others in our lifetime, it can still be a magical time of creating memories you'll cherish for years to come. Here four ways you can make memories this holiday season. 1. Make a recording...
Merry & Bright Trivia Gala Night helps Foundation raise $2 million in 2020
We, at Cure Sanfilippo Foundation, are nearly speechless. $2 million in 2020 raised for research! Thank you to everyone who supported the Foundation's mission this year, especially partner families and supporters. Really incredible. And you ended the year with a...
AAV immunity is a significant issue for genetic therapies for all diseases
Glenn and Cara O'Neill, President and Chief Science Officer, respectively, of Cure Sanfilippo Foundation, were honored to be invited by the National Institutes of Health (NIH)/National Center for Advancing Translational Sciences (NCATS) group to speak at their...
Peer-reviewed publication of first-ever Caregiver Preference Study on Sanfilippo
The first peer-reviewed publication of the Sanfilippo Caregiver Preference Study was released in December 2020 in Neurology and Therapy. This is the first-ever Caregiver Preference Study regarding Sanfilippo Syndrome, which explores what parents consider “meaningful...
Exploring anti-fungal immunity and the airway microbiome in Sanfilippo syndrome (MPS III)
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...
Families are the foundation of the Foundation
Every inch of progress towards finding a treatment and/or cure for Sanfilippo Syndrome happens because of the individual families of children with this disease. Families fighting to change fate for their child and all the others. Cure Sanfilippo Foundation is honored...
A parent’s thoughts on a powerful day, World Sanfilippo Awareness Day
Today is a day that includes you You are more than just a donor to us. You are a cherished part of the Sanfilippo community, and today the community is celebrating World Sanfilippo Awareness Day! Today is dedicated to the power of spreading awareness and sparking...