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Trailer

Trailer

FromSYNGAP1 Stories


Trailer

FromSYNGAP1 Stories

ratings:
Length:
1 minute
Released:
Jan 24, 2023
Format:
Podcast episode

Description

Welcome to Syngap Stories, a podcast dedicated to stories from the Syngap community about living with a rare, untreatable genetic disorder.

What is SYNGAP1:  https://www.syngapresearchfund.org/home/what-is-syngap1
Syngap Research Fund:  https://www.syngapresearchfund.org/

Follow Ashley:  
 Facebook:  https://www.facebook.com/ashley.hewettfrye
 LinkedIn:  https://www.linkedin.com/in/ashley-frye-62095582/
 
Connect with SRF:  
 Facebook:  https://www.facebook.com/cureSYNGAP1
 Twitter:  https://twitter.com/intent/user?screen_name=cureSYNGAP1
 Instagram:  https://www.instagram.com/curesyngap1/
 LinkedIn:  https://www.linkedin.com/company/18940628/admin/
 TikTok:  https://www.tiktok.com/@curesyngap1
 SYNGAP10 Weekly Video Podcast with Mike:  https://www.youtube.com/playlist?list=PLjpr3a14_ls38mAeOZeErFpEjbrw5mGhR
 
Wednesday Zoom Meeting for Syngap Families:
Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417

Comments and suggestions:  ed@syngapresearchfund.org

Music:  In the Forest... by Lesfm from Pixabay  

Episode 000 SynGAP Stories, January 22, 2023
#Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
Released:
Jan 24, 2023
Format:
Podcast episode

Titles in the series (29)

SYNGAP1 is a rare disease that affects Ashley Frye's son Nathan. As of January 1, 2024, there are 1,339 people in the world diagnosed with SYNGAP1. There is no treatment. There is no cure. In each episode of SYNGAP1 Stories, Ashley will chat with SynGap parents, volunteers, caregivers, researchers, and partners about their journey with SYNGAP1 in their lives. Their joys and successes, as well as heartaches and advice, will be discussed in this heart-warming series as we support the SynGap community. #841128