Show Notes:
In Episode 4, Ashley talks with SYNGAP1 Mom Kali Worth. Kali talks about missing milestones, epilepsy, genetic testing, expanding your community as a rare parent as well as the joys Kailyn (Kai) brings to her life.
Kai’s Warrior Story:  ⁠https://www.syngapresearchfund.org/syngap-warrior/kai
Read Kali's SRF bio, blogs and a video of Kai’s story here.
Follow Kali on Twitter:  https://twitter.com/WorthKali
What is SYNGAP1: ⁠https://www.syngapresearchfund.org/home/what-is-syngap1⁠
Syngap Research Fund: ⁠https://www.syngapresearchfund.org/⁠
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
Follow ⁠Ashley Frye⁠:
  ⁠Facebook⁠
  ⁠LinkedIn⁠
  ⁠Instagram⁠
Nathan’s Warrior Story: ⁠https://www.syngapresearchfund.org/syngap-warrior/nathan⁠
Wednesday SRF Family Zoom Meeting:
⁠Syngap.Fund/SRFfam⁠ Meeting ID - 972 0059 2178 Passcode - 848417
Comments: ed@syngapresearchfund.org
Music: ⁠In the Forest... by Lesfm from Pixabay ⁠
Episode 004 SynGAP Stories, March 21, 2023
#SyngapStoriesKAILYN #Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology