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Ashley talks to SRF Co-founder Mike Graglia

Ashley talks to SRF Co-founder Mike Graglia

FromSYNGAP1 Stories


Ashley talks to SRF Co-founder Mike Graglia

FromSYNGAP1 Stories

ratings:
Length:
27 minutes
Released:
Feb 21, 2023
Format:
Podcast episode

Description

Show Notes:
Ashley talks with SRF Co-founder and Syngap Dad Mike Graglia. Mike talks about founding SRF with his wife, Ashley Evans & raising a Syngapian child. He offers his best advice to new SYNGAP1 parents.
What is SYNGAP1: https://www.syngapresearchfund.org/home/what-is-syngap1
Syngap Research Fund: https://www.syngapresearchfund.org/
Donate: https://www.syngapresearchfund.org/donate/donate#googtrans(en|en)
Mike Graglia: https://www.syngapresearchfund.org/team/mike-graglia
Ashley Evans: https://www.syngapresearchfund.org/team/ashley-evans-mphil-mba-co-founder
Mike & Ashley’s Story: https://youtu.be/lLO2hsAi4-M & feature in Newsweek:  https://www.newsweek.com/my-son-syngap1-rare-genetic-condition-1776362
Tony’s Warrior Story: https://www.syngapresearchfund.org/syngap-warrior/tony
Number Blocks:  https://www.netflix.com/title/81272431
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/curesyngap1/
TikTok: https://www.tiktok.com/@curesyngap1
SYNGAP10 Weekly Video Podcast with Mike: https://www.youtube.com/playlist?list=PLjpr3a14_ls38mAeOZeErFpEjbrw5mGhR
Follow Ashley Frye:
Facebook: https://www.facebook.com/ashley.hewettfrye
LinkedIn: https://www.linkedin.com/in/ashley-frye-62095582/
Instagram:  https://www.instagram.com/fryemom/
Nathan’s Warrior Story: https://www.syngapresearchfund.org/syngap-warrior/nathan
Wednesday SRF Family Zoom Meeting:
Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417
Comments: ed@syngapresearchfund.org
Music: In the Forest... by Lesfm from Pixabay 
Episode 002 SynGAP Stories, February 21, 2023
#Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
Released:
Feb 21, 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