Kali Worth, SYNGAP1 Mom to Kailyn (Kai) is Ashley’s guest.
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
Why Getting a Genetic Diagnosis Matters
How to Get Free Genetic Testing
Connect with SRF (@curesyngap1):
SYNGAP10 Weekly Video Podcast w/ Mike
Follow Ashley Frye:
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
