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,...
Parent News
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Advocacy group submitted comments to the U.S. Food and Drug Administration's (FDA) on May 5, 2020, regarding its draft guidance on drug development for Sanfilippo Syndrome for review.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...