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.
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 thought-leadership projects.
Collaborations
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
A Natural History Study of Patients With Sanfilippo Disease(s) (MPS3) | Type IIIA, IIIB, IIIC, IIID | Observational Study | Lysosomal Center
Page last updated: January 31, 2023 For web accessibility options: Click/tap the floating blue icon on the right.Trial Information Lysosomal and Rare Disorders Research and Treatment Center, Inc. is conducting a natural history study of patients with Sanfilippo...
Muskego Girls Basketball Association donates $33,409 from its 2023 “Swish for A Wish” to Saving Liv
The Milawukee-area community continues to rally around the Stoop family and its fight to save their daughter Olivia. Olivia has Sanfilippo Syndrome, a terminal degenerative disease in children that currently has no FDA-approved therapy or cure. But there is research...
Foundation’s Cara O’Neill named to FDA and CTTI Patient Engagement Collaborative (PEC)
Dr. Cara O'Neill, the Foundation's co-founder and Chief Science Officer, has been selected by the U.S. Food and Drug Administration (FDA) and the Clinical Trials Transformation Initiative (CTTI) as a representative for the Patient Engagement Collaborative (PEC)....
Recent scientific articles relevant to Sanfilippo Syndrome: October-December 2022, digest
Every week thousands of scientific articles on various topics are published. Here are some recent articles and abstracts that are relevant to understanding, managing, and/or treating Sanfilippo Syndrome (mucopolysaccharidosis III or MPS III) from October 2022 to...
A Natural History Study of Sanfilippo Syndrome Type D (MPSIIID) | Type IIID | Observational Study | Phoenix Nest
Page last updated: December 13, 2022 For web accessibility options: Click/tap the floating blue icon on the right. Trial Information Phoenix Nest and National Institute of Neurological Disorders and Stroke (NINDS) are conducting a observational research study, which...
Saving Liv video raises $100,000+ in first 36 hours; gathering media attention
Liv's parents give thanks for support of "Saving Liv" Olivia Stoop's parents are on a quest: To raise $1 million for research that can lead to a clinical trial that could save their 3-year-old daughter's life. On Saturday, Olivia's third birthday, they launched a...