May 30, 2023

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!

38 minutes

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

VNS Therapy

Follow Lauren:

Twitter

Email: [email protected]

Follow ⁠⁠⁠⁠Ashley Frye⁠⁠⁠⁠:

⁠⁠⁠⁠LinkedIn⁠⁠⁠⁠

⁠Facebook⁠

⁠⁠⁠⁠Instagram⁠⁠⁠⁠

Nathan’s Warrior Story

SYNGAP1 Stories ⁠Episode 001⁠ - Ashley Frye

SYNGAP1 Stories ⁠Episode 005⁠ - Panda

Panda’s News Story: ⁠Nathan’s Dog⁠

SRF & SYNGAP1 Info:⁠

What is SYNGAP1? ⁠

Syngap Research Fund

Donate: ⁠⁠⁠https://Syngap.Fund/Donate⁠⁠⁠

SYNGAP1 & Epilepsy⁠⁠⁠

Why Getting a Genetic Diagnosis Matters⁠⁠⁠

How to Get Free Genetic Testing⁠⁠⁠

⁠⁠⁠ Special Needs Trusts⁠⁠⁠

Connect with SRF (@curesyngap1):

⁠⁠⁠Facebook⁠⁠⁠

⁠⁠⁠Twitter⁠⁠⁠

⁠⁠⁠Instagram⁠⁠⁠

⁠⁠⁠LinkedIn⁠⁠⁠

⁠⁠⁠TikTok⁠⁠⁠

⁠⁠⁠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

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