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: [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