SYNGAP1 Stories, shared by families about their lives raising Syngapians

hosted by Ashley Frye

‍

Sydney & Brett Stelmaszek, SRF volunteers, share their journey with their 3 sons to find the best care for Emmitt, diagnosed w/ SYNGAP1 in 2019.

Vicky Arteaga is the Latin America Director of SRF & SYNGAP1 Mom to Amelia. Her efforts help the SYNGAP1 community in Latin America & across the globe.

Mike Graglia, SRF Managing Dir. & SYNGAP1 Dad to Tony. Going back to school can be difficult. Tony's experience shows that it's so much harder for kids with SYNGAP1!

Samar Katnani, SRF Volunteer and Mom to 3yo Syngapian Reema, talks honestly about meds, sharing your story, self-help, fake crying, & much more.

Suzanne Jones, SRF BOD chair & Mom to Syngapian Jansen, talks about raising funds for SRF, including SynGAP Soirée, and raising Jansen!

This week's guest is Stefanie Decker, SYNGAP1 Mom to 5-year-old Saydee, who has "the best smile"!

In this very candid episode, SYNGAP1 Mom Monica Harding opens up to Ashley about her 17-year-old son Jaxon.

Ashley chats with SRF Co-Founder, and SYNGAP1 Mom to Tony, Ashley Evans on the 5th birthday of SRF!

Ashley talks with Danielle Williams, Mom to two daughters in Australia, each with SYNGAP1.

Ashley talks with SYNGAP1 Mom & SRF Operations Mgr. Lauren Perry about Will’s recent successful VNS replacement surgery, markers & more.

Ashley chats with Certified Christian Life Coach Heather Bensch about her daughter McKaela, who was diagnosed with SYNGAP1 as an adult.

Peter Halliburton, SYNGAP1 Dad & head of SRF's Resource Mobilization team, joins Ashley.

It's Ashley's turn, as she talks about her beginnings of volunteering for SRF and what she's working on now! Pickleball, anyone?

In Episode 5, Ashley talks with Cecilia Anastos, who has raised and trained service dogs for the SYNGAP1 & rare disease community.

Kali Worth, SYNGAP1 Mom to Kailyn (Kai) is Ashley's guest.

Ashley's Guest - SRF Community Activation Leader Corey Baysden

Ashley talks to SRF Co-founder Mike Graglia

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

Host Ashley Frye Introduces a New SYNGAP1 Podcast

Donate Registry

© Copyright 2018-2023 Syngap Research Fund | All Rights Reserved |