The Sept. 7, 2021, episode 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 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; how the Pacl family has built a following of more than 1.5 MILLION followers on TikTok, sharing their son Logan’s life with Sanfilippo; why the Foundation completes the arduous process of an annual independent audit; how loyal supporters lift families’ spirits with their devotion and create a critical sustainable stream of income that enables the Foundation better plan what research it can fund next; and how we’re helping people celebrate the power of inclusion with a limited-edition collection of fun gear that also helps fund the mission to cure for Sanfilippo.
Download the Get-to-Know Your Child Worksheet: Download the free worksheet
Follow the Pacl Family on TikTok: @Love_Logan07
Follow the Sarkar Family on TikTok: @iAmMrsNesbitt
Follow the Fowler Family on TikTok: @HaidynsHope
Follow the Cure Sanfilippo Foundation on TikTok: @CureSanfilippo
Shop the “Inclusion is Awesome” collection: Check out the gear
Listen to the Podcast
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.