Show Notes:
Episode 10 comes from "down under" as Ashley talks with Danielle Williams, Mom to two daughters, now 13 & 11 years old, each with the same de novo SYNGAP1 mutation. They talk about the heartbreaks of two diagnoses, living with no sleep, connecting to the community, advice to newly diagnosed families, and the joys of cuddling with a teenager.
Jaeli & Dali’s Story
Williams Family Story
Raising Awareness in the Early Days
Follow Danielle:  LinkedIn
Danielle's Business Website
Additional Reading - Five Things Parents Need to Know
Danielle Co-Founded the Following Organizations:
  Syngap Research Fund Australia - Facebook Page
  Syngap Global Network
  Genetic Epilepsy Team Australia
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 - ⁠⁠Hotel Reservations⁠⁠
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 010 SYNGAP1 Stories, June 13, 2023
#SYNGAP1SoriesJaeli #SYNGAP1StoriesDali #Syngap #SYNGAP1 #SYNGAP1Stories #siblings #SYNGAP1siblings #rarediseasesiblings #epilepsy #epilepsyawareness #autism #autismawareness #intellectualdisability #id #anxiety #raredisease #rarediseaseresearch #SynGAPResearchFund #careaboutrare #advocacy #patientadvocacy #neurology