A Close Look at Sanfilippo

Episode 2. "A Close Look At Sanfilippo” is a regular 10-minute podcast covering five topics regarding Sanfilippo Syndrome, a rapidly degenerative disease in children currently with no FDA-approved treatment.

In this episode Glenn O’Neill, president and co-founder of Cure Sanfilippo Foundation, remembers and honors Reagan McGee; talks about how a new tool to test drugs that can lessen the buildup of heparan sulfate; gives a sneak peek into the face of the Foundation’s next video campaign, coming out later this year; shares how the Foundation is walking the walk to ensure information accessibility; and details the Foundation’s latest grant round of more than $1 million in funding for five new research projects to help children with Sanfilippo.

Information about the new testing assay: https://www.CureSFF.org/article2

Questions: [email protected]

Follow Cure Sanfilippo Foundation:
Facebook: https://www.facebook.com/CureSanfilip...
Twitter: https://twitter.com/CureSanfilippoF
Instagram: https://www.instagram.com/curesanfili...
TikTok: https://www.tiktok.com/@curesanfilippo

#CureSanfilippo #RareDisease #ACureCantWait #ACloseLook #Podcast

Music credit: Springish by Gillicuddy (https://www.freemusicarchive.org/musi...)

© 2021 Copyright reserved Cure Sanfilippo Foundation

Episode 1. “A Close Look At Sanfilippo” is a regular 10-minute podcast covering five hot topics regarding Sanfilippo Syndrome, a rapidly degenerative disease in children currently with no FDA-approved treatment.

In this episode Glenn O’Neill, president and co-founder of Cure Sanfilippo Foundation, talks about the Foundation's application for the Chan Zuckerberg Initiative Rare As One grant and how it could accelerate several global key research and collaboration projects; how use of biomarkers to approve a new Alzheimer’s drug could open doors for Sanfilippo and other degenerative diseases that can’t wait for “just perfect” options; how families of children with Sanfilippo sharing their medical records can accelerate scientists’ development of trials and treatments; the many ways people are fundraising and supporting the Foundation, enabling it to continue its mission to find a treatment or cure; and an update on the Anakinra clinical trial’s initial indicators and what comes next.

Dr. Emil Kakkis article: https://www.CureSFF.org/article

For families to join AllStripes data collection: https://www.AllStripes.com/Sanfilippo

Questions/Comments: [email protected]

Follow and/or support Cure Sanfilippo Foundation:
Website: www.CureSanfilippoFoundation.org

Music credit: Springish by Gillicuddy (https://www.freemusicarchive.org/musi...)
© 2021 Copyright reserved Cure Sanfilippo Foundation