Sydney & Brett Stelmaszek, SRF volunteers, share their journey with their 3 sons to find the best care for Emmitt, diagnosed w/ SYNGAP1 in 2019.
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:
Instagram – @UFD_Tech
Twitter – @SydneyStel & @UFDTech
Facebook – Sydney
YouTube – @UFDTech
YouTube – Our Syngap Journey
More links:
SPECIAL WEBINAR: $25M Gift to ENDD for SYNGAP1 and STXBP1
MDBR – Blog Post by Sydney
Follow Ashley Frye:
Nathan’s Warrior Story
SYNGAP1 Stories Episode 001 – Ashley Frye
SRF & SYNGAP1 Info:
What is SYNGAP1?
Syngap Research Fund – https://syngapresearchfund.org
Donate – https://Syngap.Fund/Donate
Why Getting a Genetic Diagnosis Matters
How to Get Free Genetic Testing
Special Needs Trusts
Connect with SRF (@curesyngap1):
SYNGAP10 Weekly Video Podcast w/ Mike
SYNGAP1 Conference 2023, hosted by SRF – Registration
Wednesday SRF Family Zoom Meeting:
Syngap.Fund/SRFfam Meeting ID – 972 0059 2178 Passcode – 848417
Comments: [email protected]
Music: In the Forest… by Lesfm from Pixabay
Episode 018 SYNGAP1 Stories, September 19, 2023
#SYNGAP1StoriesEmmitt #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp18 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Therapy #Family #Water #Agression #Behavior #Cannonball #CFTC #UFD
