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12 episodes
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A Close Look at Sanfilippo Cure Sanfilippo Foundation
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- Business
Questions/Comments: Email Contact@CureSanfilippoFoundation.orgFollow 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
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 Univers...
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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 Fu...
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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 addre...
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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 coll...
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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 Wo...
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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 app...