Sanfilippo Is a Rare Disease, But There Is Greater Awareness Than Ever.
The compassion of people is truly amazing. In five years, more than $8 million has been donated to the Foundation.
All of it coming from individuals who heard the stories of Sanfilippo families and made the selfless choice to help our kids have a chance at life. More than 40,000 strangers have stepped up to help find a cure for Sanfilippo Syndrome.
We work to keep elevating awareness by constantly telling the story. For one Sanfilippo family’s story is the reality for all of us.
Curing Sanfilippo is our ultimate goal, but your support also allows us to play a critical roll in influencing the road that leads there. Learn more about the Foundation’s thought-leadership projects.
Curing Sanfilippo is our ultimate goal, but your support also allows us to play a critical roll in influencing the road that leads there. Learn more about the Foundation’s collaborative mindset.
Sanfilippo Syndrome In The News
Natural History Study of Participants With Sanfilippo Syndrome Type IIIC (MPSIIIC) | Type IIIC | Observational Study | Hospices Civils De Lyon
Page last updated: April 24, 2023 For web accessibility options: Click/tap the floating blue icon on the right.Trial Information Hospices Civils De Lyon in France is conducting a single-site natural history study of patients with Sanfilippo Syndrome Type C (MPS IIIC...
Tips for Make-A-Wish trips to Disney World, from a Sanfilippo family
Many families choose a trip to Disney as their Make-A-Wish. While exciting, a Make-A-Wish trip to Disney can also be overwhelming for a family with a child with special needs to plan for. Thankfully, here are some tips for Make-A-Wish trips to Disney you can use to...
O’Neill joins other rare disease advocates for meeting with FDA Commissioner, Directors
Last week, Cure Sanfilippo Foundation Chief Science Officer and Co-Founder Cara O'Neill was privileged to be among a group of fellow ultra rare disease advocates meeting with the FDA Commissioner Robert Califf, MD, and Center Directors. The group presented the urgent...
Family Friday 2023: The Ulrich Family
Hear directly from the Ulrich family – Jericho, Christin, Elise, and Veda!Awareness is a huge part of fighting Sanfilippo Syndrome. With awareness comes caring and understanding, which can lead to support and donations for research that can give children with...
2023 Super Eliza 5K brings annual event’s total to $100,000
Saturday, April 1, was the eighth annual Super Eliza 5K was extra special. This year, the event to help fund research to cure Sanfilippo Syndrome crossed the impressive mark of having raised more than $100,000 collectively. The USC Pediatric Pharmacy Advocacy Group...
$432,000 donated so far in 2023 to help children with Sanfilippo Syndrome
ANNOUNCEMENT The Foundation is thrilled to announce that, together, generous donors have helped raise $432,000 so far this year to help children with Sanfilippo Syndrome through funding research and clinical trials! There are two reasons this is such a moment to...