DiscoverSYNGAP1 StoriesZoe Bailey, SRF's Volunteer Coordinator, talks about finding SRF, volunteering, the SYNGAP1 conference and Zoe's daughter Kaia.
Zoe Bailey, SRF's Volunteer Coordinator, talks about finding SRF, volunteering, the SYNGAP1 conference and Zoe's daughter Kaia.

Zoe Bailey, SRF's Volunteer Coordinator, talks about finding SRF, volunteering, the SYNGAP1 conference and Zoe's daughter Kaia.

Update: 2024-12-31
Share

Description

Show Notes


Zoe Bailey, SRF's Volunteer Coordinator and State Ambassador and Advocacy Lead (California), talks about grieving after the diagnosis, finding SRF, volunteering, and the recent SYNGAP1 Conference in LA. She chats about the importance of self-care as well as Kaia's progress since starting a repurposed drug (Tanganil).


All episodes are available at ⁠⁠⁠⁠⁠⁠⁠⁠Syngap.Fund/Stories⁠⁠⁠⁠⁠⁠⁠⁠.


Kaia's Warrior Story


Connect with Zoe:



Connect with ⁠⁠⁠⁠⁠⁠Rainy:




SRF & SYNGAP1 Info:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠



Connect with SRF (@curesyngap1):



Family Zoom Meeting (Weekly on Wednesdays, 8PM ET):



Comments: ⁠⁠⁠⁠⁠⁠⁠⁠ed@curesyngap1.org⁠⁠⁠⁠⁠⁠⁠⁠


Music: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠In the Forest... by Lesfm from Pixabay ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠


Episode 030 SYNGAP1 Stories, December 31, 2024


#SYNGAP1StoriesKaia #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp30 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #Water #Music #SyngapConf #SYNGAP1Siblings #

Comments 
In Channel
loading
00:00
00:00
x

0.5x

0.8x

1.0x

1.25x

1.5x

2.0x

3.0x

Sleep Timer

Off

End of Episode

5 Minutes

10 Minutes

15 Minutes

30 Minutes

45 Minutes

60 Minutes

120 Minutes

Zoe Bailey, SRF's Volunteer Coordinator, talks about finding SRF, volunteering, the SYNGAP1 conference and Zoe's daughter Kaia.

Zoe Bailey, SRF's Volunteer Coordinator, talks about finding SRF, volunteering, the SYNGAP1 conference and Zoe's daughter Kaia.

Syngap Research Fund, 501(c)(3)