EPISODE 4: “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 a free worksheet perfect for helping your child’s new teachers get to know them quickly so they build that critical rapport earlier; Guest Mom Noelle Pacl tells us about sharing their son Logan's life with Sanfilippo on TikTok and how it has built a following of more than 1.5 MILLION followers; 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.
Get-to-Know Your Child Worksheet: www.CureSFF.org/worksheet
Pacl Family on TikTok: / love_logan07
Sarkar Family on TikTok: / iammrsnesbitt
Fowler Family on TikTok: / haidynshope
Cure Sanfilippo Foundation on TikTok: / curesanfilippo
Inclusion is Awesome collection: CureSanfilippoFoundation.org/...
Questions: Contact@CureSanfilippoFoundation.org
Follow Cure Sanfilippo Foundation:
Website: www.CureSanfilippoFoundation.org
Facebook: / curesanfilippofoundation
Twitter: / curesanfilippof
Instagram: / curesanfilippofnd
TikTok: / curesanfilippo
#CureSanfilippo #RareDisease #ACureCantWait #ACloseLook #Podcast
Music credit: Springish by Gillicuddy (www.freemusicarchive.org/musi...)
© 2021 Copyright reserved Cure Sanfilippo Foundation
11 июл 2024
