What is Happening In Sanfilippo Research?
Stay up to date on the latest information regarding scientific aspects of Sanfilippo Syndrome and progress to find a treatment or cure.
Recent News
Any developmental delay or intellectual disability calls for genome sequencing
The American College of Medical Genetics and Genomics strongly recommends exome and genome sequencing as a first or second-tier test for children with developmental delay or intellectual disability that occurs by age 18, as well as those with congenital anomalies that...
Podcast Episode 4: Teacher worksheet; Sanfilippo on TikTok + more
The Sept. 7, 2021, episode of the Foundation's "A Close Look at Sanfilippo" podcast spends 10 minutes (and a little more in this episode) diving into five hot topics regarding Sanfilippo Syndrome, a rapidly degenerative disease in children currently with no...
Podcast Episode 3: Free educator guide; Dopamine & reversing Autism behaviors + more
The Aug. 23, 2021, episode of the Foundation's "A Close Look at Sanfilippo" podcast spends 10 minutes (and a little more in this episode) diving into five hot topics regarding Sanfilippo Syndrome, a rapidly degenerative disease in children currently with no...
Advancing the Understanding of Special Education and Therapeutic Needs of Children with Neurodegenerative Disorders
The challenges of the pandemic shined a light on the critical role of special educators and rehabilitative therapists to protect the skills of children’ with neurodegenerative disorders. This academic publication and white paper provides teachers with a guide for...
Podcast Episode 2: In Memory of Reagan; New testing created; $1M granted for 5 new projects + more
It's been just two weeks since the last episode of the Foundation's "A Close Look at Sanfilippo" podcast, and there's already so much to share! The podcast's 10 minutes dives into: The life and importance of Reagan McGee; How your support of the Foundation helped...
New enzyme assay testing method for Sanfilippo created with Foundation funding
A New and Improved Testing Option for Evaluating Potential Drugs for Sanfilippo In the fight to cure Sanfilippo syndrome, a key basic requirement is to be able to measure critical substances and to do so as accurately, easily, and inexpensively as possible. The study...
Other Sources of News
ClinicalTrials.gov
Immediately see when clinical trials for Sanfilippo Syndrome are listed and detailed information.
Sanfilippo News
A site that aggregates news about Sanfilippo Syndrome into a single location.
RARE Cast – Global Genes’ Podcast
Hosted by award-winning journalist Daniel Levine, RARE Cast focuses on the intersection of rare disease with business, science, and policy in a weekly podcast.