Show Notes:
Ashley and SYNGAP1 Mom Stefanie Decker chat about 5-year-old Saydee. Diagnosed in 2020, Saydee loves water, is a local “celebrity”, and has “the best smile’! Listen to their SYNGAP1 journey and how they handle the ups and downs of living with a rare disease.
Stefanie’s SRF BIO
Saydee’s Warrior Story
More links:
2022 Caregiver Connect - blog written by Stefanie
Follow Ashley Frye:
SYNGAP1 Stories Episode 001 - Ashley Frye
SYNGAP1 Stories Episode 005 - Panda
Panda’s News Story: Nathan’s Dog
SRF & SYNGAP1 Info:
Donate: https://Syngap.Fund/Donate
Why Getting a Genetic Diagnosis Matters
How to Get Free Genetic Testing
Connect with SRF (@curesyngap1):
SYNGAP10 Weekly Video Podcast w/ Mike
SYNGAP1 Conference 2023, hosted by SRF - Registration
SRF Newsletter Special 5th Birthday Issue 6/27/23
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 013 SYNGAP1 Stories, July 25, 2023
#SYNGAP1StoriesSaydee #Syngap #SYNGAP1 #SYNGAP1Stories #epilepsy #epilepsyawareness #autism #autismawareness #intellectualdisability #id #anxiety #raredisease #rarediseaseresearch #SynGAPResearchFund #careaboutrare #advocacy #patientadvocacy #neurology #genetictesting #therapy #family #water #sisters #siblings #bestsmile
