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...
Press Release
‘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...
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...
Lack of appropriate education for children with significant special needs
Dr. Cara O'NeillChief Science Officer for Cure Sanfilippo Foundation The pandemic has Cure Sanfilippo Foundation embarking on some new advocacy work by Chief Science Officer Cara O'Neill. Many, many children with significant special needs, especially children with...
Could your daily steps help save children’s lives? 👟
You take thousands of steps every day. And those daily steps can help save children from Sanfilippo Syndrome and keep them walking, running, and smiling. Just by going about your typical day. Step Up To Cure Sanfilippo is a one-day steps fundraiser where people...
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...