The Washington Post published an article, "Her son is dying. She hopes the FDA will let her try to save him." on Dec. 2, 2023. The following is a commentary from Cure Sanfilippo Foundation Chief Science Officer & Co-Founder Cara O'Neill, MD, FAAP, regarding access...
Press Release
Giving Tuesday 2023 raises $324,753 for Sanfilippo research
Giving Tuesday 2023 fundraising total ... $324,753 raised! Families of children with Sanfilippo Syndrome engaged their communities and personal networks around the country and world, joining Cure Sanfilippo Foundation in collectively fundraising $324,753 for research...
$8 million awarded to study brain cell death in fatal pediatric diseases, including Sanfilippo
Washington University School of Medicine (St. Louis, MO) has received nearly $8 million from the National Institute of Neurological Disorders and Stroke of the National Institutes of Health (NIH) to help determine the root causes of brain cell death in fatal pediatric...
Families & friends fighting to ensure Sanfilippo research continues
We are so thankful for the many families who continue hosting events and fundraisers to support critical research -- especially early, novel and translational research -- that the Foundation funds, in addition to clinical trials. Here are several fundraisers that have...
With more work, research, and clinical trials, we know [a therapy] is coming
Opening ADVANCE 2023, Glenn O'Neill, President & Co-Founder of Cure Sanfilippo Foundation, shared the following remarks with the audience of more than 370 parents, researchers, clinicians, therapists, educators, and more, reviewing the 10-years of the Foundation...
ADVANCE 2023 recordings; watch at your convenience
Recorded Sessions Available for On-Demand Replay The virtual ADVANCE 2023, a Sanfilippo Community Conference, held August 29-30, 2023, is a forum for education, scientific presentations, networking, and community building that brought together families and caregivers,...
Family Friday 2023: The Hooks Family
Hear directly from the Hooks family – Parents Cory and Jamie, Trenton (age 17, Type A), and siblings Treyven and Tyson!Awareness is a huge part of fighting Sanfilippo Syndrome. With awareness comes caring and understanding, which can lead to support and donations for...
Recent scientific articles relevant to Sanfilippo Syndrome: June – July 2023, 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 June 2023 to July...
Family Friday 2023: The Nevins Family
Hear directly from the Nevins family – Parents Shannon and Jerad, Nathan (age 7, Type A), and sister Kennedy!Awareness is a huge part of fighting Sanfilippo Syndrome. With awareness comes caring and understanding, which can lead to support and donations for research...