Sanfilippo Is a Rare Disease, But There Is Greater Awareness Than Ever.
The compassion of people is truly amazing. In five years, more than $8 million has been donated to the Foundation.
All of it coming from individuals who heard the stories of Sanfilippo families and made the selfless choice to help our kids have a chance at life. More than 40,000 strangers have stepped up to help find a cure for Sanfilippo Syndrome.
We work to keep elevating awareness by constantly telling the story. For one Sanfilippo family’s story is the reality for all of us.
Thought-Leadership Projects
Curing Sanfilippo is our ultimate goal, but your support also allows us to play a critical roll in influencing the road that leads there. Learn more about the Foundation’s thought-leadership projects.
Collaborations
Curing Sanfilippo is our ultimate goal, but your support also allows us to play a critical roll in influencing the road that leads there. Learn more about the Foundation’s collaborative mindset.
Sanfilippo Syndrome In The News
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...
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...