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...
Parent News
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...
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...
Save on your holiday cards and help cure Sanfilippo Syndrome
Now that it's November, people's thoughts are turning to the holidays. Early on people's holiday to-do list: ordering holiday cards! There's a way for you can save 20% and help cure Sanfilippo Syndrome at the same time. Use the promo code FUNDRAISESANFILIPPO on...
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,...
‘Save Connor’ viral video raises $100,000 in 27 hours for Sanfilippo clinical trail
FOR IMMEDIATE RELEASE MEDIA CONTACT: Glenn O’NeillPresident & Co-FounderCure Sanfilippo FoundationGlenn@CureSanfilippoFoundation.org(803) 413-0525 Columbia, SC (Oct. 17, 2020) – More than 1,600 people have been moved by the "Save Connor" viral video and...
‘Save Connor’: Parents using viral video to overcome the single obstacle in the way of saving their son’s life: $3 million
FOR IMMEDIATE RELEASE MEDIA CONTACT: Glenn O’NeillPresident & Co-FounderCure Sanfilippo FoundationGlenn@CureSanfilippoFoundation.org(803) 413-0525 Columbia, SC (Oct. 16, 2020) - The parents of Connor Dobbyn, Marisa DiChiacchio and Mike Dobbyn, are using a viral...
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...
2020 Dino Dash 4 Declan 5K fundraiser enjoyed virtually
Even though the second annual Dino Dash 4 Declan wasn't able to happen as it did the year before, friends and supporters laced up their shoes to participate virtually. All in support of Declan and to find research to cure Sanfilippo Syndrome. Folks participated in the...