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SynGAP Stories

SRF SynGAP Stories

Released: 2023-02-07

Free New

2 Episodes

Audio

Free New

2 Episodes

Audio

Released: 2023-02-07

Most Recent Episode

Our Host - Ashley Frye tells her family's SYNGAP1 Story

Time: 29:05

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Show Notes:

Host Ashley Frye discusses her family's journey to a SYNGAP1 diagnosis for her son Nathan and living with and caring for a young child with a rare disease.

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/

Nathan’s Warrior Story: https://www.syngapresearchfund.org/syngap-warrior/nathan

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

Cannonball For A Cure: https://www.syngapresearchfund.org/post/pr-12-ufd-tech-hosts-second-annual-cannonball-for-the-cure-charity-stream-to-benefit-syngap-research-fund

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 001 SynGAP Stories, February 7, 2023

#Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology

Episode ID: 1000598488440

GUID: 942ad164-26ca-4701-ab59-f1617d250f40

Release Date: 07/02/2023, 14:08:52

Description

SYNGAP1 is a rare disease that affects Ashley Frye's son Nathan. Fewer than 1,200 patients have been diagnosed as of January, 2023. There is no treatment. There is no cure. In each episode of SynGAP 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, will be discussed in this heart-warming series as we support the SynGap community.

Feed URL

https://anchor.fm/s/d9a118bc/podcast/rss

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