New Sanfilippo drug repurposing clinical trial; updates on other research + more
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 to come. He kicks off with sharing the status of the next-generation gene therapy for Type A and B at Uni...
28 Mar 2022
WORLD Symposium highlights Anakinra early results; upcoming gene therapy trial; + more
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 disorders. Including meetings with biotechs newly engaging in Sanfilippo research, as well as researcher Dr. Haiyan ...
26 Jan 2022
Kicking off 2022; upcoming key meeting with FDA; recent grants, WORLD conference, & more
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 generosity in 2022. Find out about the four key areas the Foundation, in collaboration Team Sanfilippo Foundation, will be add...
20 Dec 2021
Anakinra Trial update, Collaboration with UNC, other research updates, Help Simon, & more
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 clinical trial underway, funded fully by kind supporters of the Foundation. She goes on to talk about the UNC co...
16 Nov 2021
BIG WEEK! World Sanfilippo Day & viral campaign, Trivia Gala, All Stripes & more
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 are raising awareness in celebration of World Sanfilippo Awareness Day, Nov. 16. He encourages that being a part of ...
28 Oct 2021
Sanfilippo & accelerated approval; newly-diagnosed guide; World Sanfilippo Awareness Day & more
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 workshop in which he made the case for why Sanfilippo Syndrome is an ideal candidate for the FDA’s accelerated a...
6 Oct 2021
Why a podcast?; Photobiomodulation research; the costs of pioneering research; + more
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; how the Step Up virtual steps challenge is shaping up for 2021 and how you can be a part of it; a recently co-funded resea...
22 Sept 2021
Patient Needs & Culture of the Laboratory; Kickoff 2021 StepUp fundraiser; families milestone & more
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’Neill, MD, FAAP, who offered multiple recommendations on how the “culture of the laboratory” can better integrate the tru...
8 Sept 2021
Get-to-know your child worksheet for school; Sanfilippo on TikTok; Inclusion + more
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 to know them quickly so they build that critical rapport earlier; Guest Mom Noelle Karina Pacl tells us about sh...
25 Aug 2021
Free Educator Guide; Dopamine & Reducing Autism Behaviors + more
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 normal and extenuating circumstances. Special guest Dr. Cara O’Neill, Foundation Chief Science Officer and co-founder, ...
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 biomarke...
25 Aug 2021
In Memory of Reagan; New testing created; $1M granted for 5 new projects + more
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, com...
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