Press Release

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,...

Professional angler Mason Propst fundraising to cure Sanfilippo

"Not a day goes by that I don’t think about [my brother Hunter] or the disease known as Sanflippo Syndrome," shared Mason Propst on Facebook in late May. "While Hunter may not be here physically anymore, he is always with us, as is Sanflippo... It is my absolute honor...

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Advocacy group submitted comments to the U.S. Food and Drug Administration's (FDA) on May 5, 2020, regarding its draft guidance on drug development for Sanfilippo Syndrome for review.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

Foundation Update | New Project & Progress – May 2020

This spring hasn’t been easy for anyone. But many generous people have made it a little less stressful for families of children with Sanfilippo Syndrome (MPS III). People's support of and generosity to Cure Sanfilippo Foundation have been the rainbow in a storm of...