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
  CHOP Natural History Study
Follow ⁠⁠⁠⁠⁠Ashley Frye⁠⁠⁠⁠⁠:
⁠⁠⁠⁠⁠LinkedIn⁠⁠⁠⁠⁠
⁠⁠Facebook⁠⁠
⁠⁠⁠⁠⁠Instagram⁠⁠⁠⁠⁠
⁠Nathan’s Warrior Story⁠
SYNGAP1 Stories ⁠⁠Episode 001⁠⁠ - Ashley Frye
SYNGAP1 Stories ⁠⁠Episode 005⁠⁠ - Panda
Panda’s News Story:  ⁠⁠Nathan’s Dog⁠⁠
SRF & SYNGAP1 Info:⁠⁠⁠
⁠What is SYNGAP1?⁠ ⁠⁠⁠
⁠ Syngap Research Fund⁠
Donate: ⁠⁠⁠⁠https://Syngap.Fund/Donate⁠⁠⁠⁠
⁠SYNGAP1 & Epilepsy⁠⁠⁠⁠
⁠Why Getting a Genetic Diagnosis Matters⁠⁠⁠⁠
⁠How to Get Free Genetic Testing⁠⁠⁠⁠
⁠⁠⁠ ⁠Special Needs Trusts⁠⁠⁠⁠
Connect with SRF (@curesyngap1):
  ⁠⁠⁠⁠Facebook⁠⁠⁠⁠
  ⁠⁠⁠⁠Twitter⁠⁠⁠⁠
  ⁠⁠⁠⁠Instagram⁠⁠⁠⁠
  ⁠⁠⁠⁠LinkedIn⁠⁠⁠⁠
  ⁠⁠⁠⁠TikTok⁠⁠⁠⁠
  ⁠⁠⁠⁠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: ed@curesyngap1.org
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