A Close Look at Sanfilippo

Nov 08 2022
A Close Look at Sanfilippo Podcast artwork

Questions/Comments: Email [email protected] and/or support Cure Sanfilippo FoundationWebsite: www.CureSanfilippoFoundation.orgFacebook: https://www.facebook.com/CureSanfilippoFoundationTwitter: https://twitter.com/CureSanfilippoFInstagram: https://www.instagram.com/curesanfilippofnd/TikTok: https://www.tiktok.com/@curesanfilippo

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New Sanfilippo drug repurposing clinical trial; updates on other research + more

Nov 08 2022 8 mins  
Episode 12: “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 things happening in Sanfilippo today, things underway, and things t

WORLD Symposium highlights Anakinra early results; upcoming gene therapy trial; + more

Mar 28 2022 8 mins  
Episode 11: “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, shares highlights from the 2022 WOLRD Symposium conference on lysosomal storage

Kicking off 2022; upcoming key meeting with FDA; recent grants, WORLD conference, & more

Jan 26 2022 9 mins  
Episode 10: “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 how the Foundation finished 2021 in fundraising and early generosit

Anakinra Trial update, Collaboration with UNC, other research updates, Help Simon, & more

Dec 20 2021 10 mins  
EPISODE 9: “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 Dr. Cara O’Neill, Chief and co-founder of Cure Sanfilippo Foundation, gives a year-end update on some important projects including the Anakinra clinica

BIG WEEK! World Sanfilippo Day & viral campaign, Trivia Gala, All Stripes & more

Nov 15 2021 12 mins  
EPISODE 8: “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, praises the Sanfilippo Syndrome community as families and organizations globally

Sanfilippo & accelerated approval; newly-diagnosed guide; World Sanfilippo Awareness Day & more

Oct 28 2021 13 mins  
Episode 7. “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, shares footage from his presentation during an EveryLife Foundation scientific w

Why a podcast?; Photobiomodulation research; the costs of pioneering research; + more

Oct 06 2021 11 mins  
Episode 6. “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 inspiration and “why” behind creating a Foundation podcast;

Patient Needs & Culture of the Laboratory; Kickoff 2021 StepUp fundraiser; families milestone & more

Sep 22 2021 10 mins  
Episode 5: “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 a recent presentation by Foundation Chief Science Officer Cara O’N

Get-to-know your child worksheet for school; Sanfilippo on TikTok; Inclusion + more

Sep 08 2021 11 mins  
Episode 4: “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 a free worksheet perfect for helping your child’s new teachers get

Free Educator Guide; Dopamine & Reducing Autism Behaviors + more

Aug 25 2021 12 mins  
Episode 3. In this episode Glenn O’Neill, president and co-founder of Cure Sanfilippo Foundation, talks about publication of a guide for educators and therapists about the important role they play in supporting neurocognitive function and quality of life in children with neurodegenerative diseases and how they can best serve these children in the educational setting, during norma