))
Kicking off 2022; upcoming key meeting with FDA; recent grants, WORLD conference, & more
Manage episode 318792550 series 2974148
Content provided by Cure Sanfilippo Foundation. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Cure Sanfilippo Foundation or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://ppacc.player.fm/legal.
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 addressing with the U.S. Food & Drug Administration (FDA) in a meeting to discuss better inclusion of the caregiver voice and preferences in research for Sanfilippo Syndrome. Glenn also shares details of two research grants that were recently approved by the Foundation’s board for funding. Hear how the Foundation is staying personally connected with its partner families, hear how they are doing, and get input on steering the Foundation. Glenn closed with explaining the significance of the upcoming WORLDSymposium conference and how the Foundation will be present. He shares excitement about two poster presentations regarding Foundation-supported projects, including one that will share results of the Anakinra clinical trial after 8 weeks of treatment.
Read the stories of our partner families: https://www.CureSFF.org/Families
Free WORLDSymposium registration for patients/families: https://worldsymposia.org/
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
12 episodes
Share
