Sydney & Brett Stelmaszek

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

Show Notes:

Sydney & Brett Stelmaszek are heavily involved in the SRF community. Sydney is on the BOD, is a patient advocate, and coordinates our connection with Children’s Hospital of Philadelphia (CHOP). Brett is the driving force behind Cannonball for the Cure (CFTC), an annual fundraiser where SYNGAP1 parents drive cross country live-streaming the entire journey to raise awareness of SYNGAP1. This episode touches on their involvement with SRF as well as raising their son Emmitt, diagnosed with SYNGAP1 while living in South Africa. Their story of excessive seizures, aggression, hope, and love while caring for Emmitt and his two brothers is at times heart-breaking, but always heartwarming.

Emmitt’s Warrior Story
Eating with Emmitt – Blog Post
Flying & Seizing from Africa to Florida – Emmitt’s Story
Sydney’s SRF Bio

Follow Sydney & Brett:

More links:

Follow ⁠⁠⁠⁠⁠⁠Ashley Frye⁠⁠⁠⁠⁠⁠:

SRF & SYNGAP1 Info:⁠⁠⁠

Connect with SRF (@curesyngap1):

SYNGAP1 Conference 2023, hosted by SRF – ⁠⁠Registration⁠⁠

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 018 SYNGAP1 Stories, September 19, 2023

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