News and information on issues relevant to you as a parent, caregiver, and advocate of a child with Sanfilippo Syndrome.
News From the Foundation
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...
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...
“What is a life worth?” is an unconscious bias among clinicians
Dr. Cara O'Neill is Chief Science Officer for Cure Sanfilippo Foundation and mother to a 10-year-old daughter with Sanfilippo Syndrome. During a wide-ranging interview with Sonia Adnan of Instagram's autismlifegram.md, they explored the mentality toward treating...
A year after going public with son’s Sanfilippo diagnosis
A year ago, the parents of Connor Dobbyn decided to go public with his diagnosis of Sanfilippo Syndrome in the hopes of helping raise critical funding for a clinical trial that could save his life. It wasn't an easy decision and one year to the day, Connor's mom...
‘Watch and wait’ approach to developmental delays is not acceptable anymore, says Dr. Cara O’Neill
Dr. Cara O'Neill, Chief Science Officer for Cure Sanfilippo Foundation, is also mother to a 10-year-old daughter with Sanfilippo Syndrome. She urged that the traditional "watch and wait" approach by physicians when a child first exhibits developmental delays is not...
“I’ll do anything for my child” is pushed to the limits by Sanfilippo parents
Like every parent, Carrie and Caleb will do anything for their children. Which has led them to facing their fear of heights in order to raise funding for research to cure Sanfilippo Syndrome, which affects their youngest daughter Haidyn. Carrie and Caleb decided to...
Support from fellow siblings of children with Sanfilippo and other disorders
Grey Chapin has carried a heavy load in her young life. Her older sister Blair died of Sanfilippo Syndrome, a terminal neurodegenerative genetic disorder, at 15-years-old in 2017 when Grey was in middle school. Grey chooses to honors her sister by helping other...
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...
AmazonSmile now available in Amazon App
Shopping on Amazon = Saving Kids Today's reality of social distancing likely has you shopping online more than ever. Imagine if every time an Amazon box arrived on your doorstep, it also helped fund research and clinical trials to cure Sanfilippo Syndrome. That would...
Mom to face her greatest fear – skydiving – to save her daughter
https://www.facebook.com/CureSanfilippoFoundation/videos/283320393012600/ Haidyn's mom Carrie is facing her life-long fear of heights to help fund research that could save her daughter. Carrie Fowler's biggest, most-crippling fear has always been heights. Flying on a...