The year’s first (and episode 10) of the Foundation’s “A Close Look at Sanfilippo” podcast spends 10 minutes (and a little more in this episode) diving into five hot topics regarding Sanfilippo Syndrome, a rapidly degenerative disease in children currently with no FDA-approved treatment.
In podcast episode 10, 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.
He also shares 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 better inclused the caregiver voice and preferences in research for Sanfilippo Syndrome.
Next Glenn shares details of two research grants that were recently approved by the Foundation’s board for funding.
Also 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 closes 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.
Podcast Episode 10’s Links
Read the stories of our partner families: https://www.CureSFF.org/Families
Free WORLDSymposium registration for patients/families: https://worldsymposia.org/
Listen to the Podcast
Watch or listen to this episode of “A Close Look at Sanfilippo” at your convenience on Facebook, Instagram, or YouTube and all major podcast services, such as Apple Podcasts, Spotify, and Amazon Music.
A Close Look At Sanfilippo” is a regular 10-minute podcast from Cure Sanfilippo Foundation. Each episode spotlights five hot topics in the pursuit of finding a treatment and giving children with Sanfilippo more good days. And how the Foundation is involved and how it accelerates the mission to get an FDA-approved treatment for the children.
Each “A Close Look At Sanfilippo” podcast is a way for partner families, donors and supporters, researchers and clinicians, and industry partners to hear directly from us. One that you can listen to at your convenience.