Parent News

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Advocacy group submitted comments to the U.S. Food and Drug Administration's (FDA) on May 5, 2020, regarding its draft guidance on drug development for Sanfilippo Syndrome for review.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

Cure Sanfilippo funds $380,000 for first MPS IIIC gene therapy

Cure Sanfilippo Foundation funds $380,000 to Phoenix Nest Inc. to support path to first-ever MPS IIIC Gene Therapy COLUMBIA, SC (May 15, 2020) — Cure Sanfilippo Foundation is thrilled to announce funding of $380,000 to the New York-based biotechnology company Phoenix...

“Light Up the Night” on May 15 to honor MPS Awareness Day

"LIGHT UP THE NIGHT" for MPS on Friday, May 15. Friday is a big day in the MPS community every year. It is International MPS Awareness Day. This Friday, May 15, when it gets dark, families, friends, and supporters will light candles outside their homes -- in their...

Inspiring generosity on GivingTuesdayNow; $146,202 in donations

Uplifting Support Seen on GivingTuesdayNow Supporters around the world answered the call of "A Cure Can't Wait" and donated an astonishing $146,202 on GivingTuesdayNow, May 5, to Cure Sanfilippo Foundation. Thirty-three families of children with Sanfilippo Syndrome...

Combined response to FDA draft guidance on drug development

On May 5, Cure Sanfilippo Foundation submitted the combined Sanfilippo Patient Advocacy Group Response to the U.S. Food And Drug Administration's (FDA) February draft guidance regarding the development of drugs to treat MPS III (Sanfilippo Syndrome). The 39-page...