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: [email protected]

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