If you know about SYNGAP1, you likely know this week’s guest Lauren Perry, SRF’s Operation Mgr. Lauren & Ashley share stories about Will & more than a few laughs!
Show Notes:
In Episode 9, Ashley talks with SYNGAP1 Mom & SRF Operations Mgr. Lauren Perry. These two talk about Lauren’s 2 teenage sons, including Will, diagnosed in 2016, seizures, and Will’s recent successful VNS replacement surgery. They also chat about his typical day, markers, and pride in the SRF community.
Will’s Warrior Story
Follow Lauren:
Email: [email protected]
Follow Ashley Frye:
SYNGAP1 Stories Episode 001 – Ashley Frye
SYNGAP1 Stories Episode 005 – Panda
Panda’s News Story: Nathan’s Dog
SRF & SYNGAP1 Info:
Donate: https://Syngap.Fund/Donate
Why Getting a Genetic Diagnosis Matters
How to Get Free Genetic Testing
Connect with SRF (@curesyngap1):
SYNGAP10 Weekly Video Podcast w/ Mike
SYNGAP1 Conference 2023, hosted by SRF – Hotel Reservations
Wednesday SRF Family Zoom Meeting:
Syngap.Fund/SRFfam Meeting ID – 972 0059 2178 Passcode – 848417
Comments: [email protected]
Music: In the Forest… by Lesfm from Pixabay
Episode 009 SYNGAP1 Stories, May 30, 2023
#SYNGAP1storiesWill #Syngap #SYNGAP1 #SYNGAP1Stories #VNStherapy #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
