Chan Zuckerberg, Sanfilippo biomarkers & FDA; Anakinra trial update; + more
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: Contact@CureSanfilippoFoundation.org
Follow and/or support Cure Sanfilippo Foundation:
Website: www.CureSanfilippoFoundation.org
Facebook: https://www.facebook.com/CureSanfilippoFoundation
Twitter: https://twitter.com/CureSanfilippoF
Instagram: https://www.instagram.com/curesanfilippofnd/
TikTok: https://www.tiktok.com/@curesanfilippo
#CureSanfilippo #RareDisease #ACureCantWait #ACloseLook #Podcast
Music credit: Springish by Gillicuddy (https://www.freemusicarchive.org/music/gillicuddy/Plays_Guitar/05-springish)
© 2021 Copyright reserved Cure Sanfilippo Foundation
Видео Chan Zuckerberg, Sanfilippo biomarkers & FDA; Anakinra trial update; + more канала Cure Sanfilippo Foundation
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: Contact@CureSanfilippoFoundation.org
Follow and/or support Cure Sanfilippo Foundation:
Website: www.CureSanfilippoFoundation.org
Facebook: https://www.facebook.com/CureSanfilippoFoundation
Twitter: https://twitter.com/CureSanfilippoF
Instagram: https://www.instagram.com/curesanfilippofnd/
TikTok: https://www.tiktok.com/@curesanfilippo
#CureSanfilippo #RareDisease #ACureCantWait #ACloseLook #Podcast
Music credit: Springish by Gillicuddy (https://www.freemusicarchive.org/music/gillicuddy/Plays_Guitar/05-springish)
© 2021 Copyright reserved Cure Sanfilippo Foundation
Видео Chan Zuckerberg, Sanfilippo biomarkers & FDA; Anakinra trial update; + more канала Cure Sanfilippo Foundation
Показать
Комментарии отсутствуют
Информация о видео
Другие видео канала
Eliza Talking 9/10/2016Cure Sanfilippo Gala 2020 - Mission Moments 3ADVANCE 22 Sanfilippo conference - Day 1, Part 2BIG WEEK! World Sanfilippo Day & viral campaign, Trivia Gala, All Stripes & moreADVANCE 22 Sanfilippo conference - Day 2, Part 1Eliza & DadTikTok For A Cure - Kickoff from @Love_Logan07Cure Sanfilippo Gala 2020 - Mission Moments 2Kicking off 2022; upcoming key meeting with FDA; recent grants, WORLD conference, & moreCure Sanfilippo on The Doctors TV Show -11/7/2016Luke & Blair: I Won't Let GoWatch this little boy sink baskets like a champ!2021 Step Up to Cure Sanfilippo | Wrap-Up VideoADVANCE 22 Sanfilippo conference - Day 2, Part 3A Message to You on the 10-Year Anniversary of Cure Sanfilippo FoundationThe most important presentation on Sanfilippo SyndromeThank you from Cure Sanfilippo Foundation FamiliesSave Connor | #shortsWhat Is Sanfilippo Syndrome?How All Stripes can help Sanfilippo syndrome research