News and information on issues relevant to you as a parent, caregiver, and advocate of a child with Sanfilippo Syndrome.
News From the Foundation
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...
From our families to yours: Favorite recipes, perfect for summer
Here are more favorite recipes from our partner families, perfect for enjoying the summer season. Byers Family's Homemade Chicken Nuggets 1 packet Lipton Onion Soup Mix 2/3 cup bread crumbs 1/8 tsp pepper 1 egg 2 tbsp water 1 stick butter, melted 1-1/2 lb skinless,...
Fabric face masks now available in Foundation’s online store
Just like a cure can't wait for the pandemic, awareness won't either. Families and supporters are taking advantage of face masks as a way to spread awareness about the fight to cure Sanfilippo Syndrome. Cure Sanfilippo Foundation is helping by offering multiple face...
Cure Sanfilippo joins in calling for addition to Cures 2.0 legislation
Cure Sanfilippo Foundation is one of 46 patient advocacy organizations to sign-on to a letter asking U.S. Representatives Diana DeGette (D-Colorado) and Fred Upton (R-Michigan) to include H.R. 4144 - Ending the Diagnostic Odyssey Act in the Cures 2.0 legislation. The...
The Big Give 2020 generates nearly $4,000 for Cure Sanfilippo
Thanks to many generous donors, the Foundation’s first-ever participation in The Big Give was a great success! The Big Give, a two-day community giving day in Ohio, raised $3,845 in honor of Central Ohio families affected by Sanfilippo Syndrome, like Oliver Kelly,...
Foundation contributes to published list of early symptoms of MPS III
Cure Sanfilippo Foundation Chief Science Officer Cara O'Neill, MD, FAAP, and Board Member Valerie Byers, PhD, are among the contributors of a newly-published paper that identifies the most-important, early symptoms of Mucopolysaccharidosis III (MPS III) to assist...
Cure Sanfilippo expands its website to provide additional information
Information, support, and resources regarding the more than 7,000 rare diseases in the world, which includes Sanfilippo Syndrome, can be scarce. Cure Sanfilippo Foundation has expanded its website to help fill the gap of information about Sanfilippo Syndrome for...
Cure Sanfilippo participating in The Big Give 2020, June 11-12
The Big Give 2020 is a 25-hour online giving rally in Ohio to support nonprofits and equip them with the resources they need to deal with challenging issues. It is an opportunity to uplift the missions of nonprofits that do vital work benefiting the people and...
Key Points of Sanfilippo Advocacy Group Response to FDA Guidance
The combined Sanfilippo Advocacy group submitted comments to the U.S. Food and Drug Administration's (FDA) on May 5, 2020, regarding its draft guidance on drug development for Sanfilippo Syndrome for review. These advocacy group is working closely with the FDA on the...
Connor Beats Sanfilippo online campaign crosses $150,000 for Type C
In spring 2019, Connor Dobbyn's parents were told their son had Sanfilippo Syndrome, Type C (one of the rarest types), and that it will take his life. Like Alzheimer's in children, Sanfilippo will cause Connor to lose all the skills he’s gained, stop speaking and...