Aktuelle Folge
Zoe Bailey, SRF's Volunteer Coordinator, talks about finding SRF, volunteering, the SYNGAP1 conference and Zoe's daughter Kaia. Länge: 47:14
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:
zoe@cureSYNGAP1.org
Zoe's SRF bio
Zoe's Instagram
Zoe's Facebook
Connect with Rainy:
rainy@cureSYNGAP1.org
Rainy's SRF Bio
Instagram - @Hope4theCure
YouTube - @Hope4theCure
Facebook - Hope SelahMay
SYNGAP1 Stories Episode 028
SRF & SYNGAP1 Info:
What is SYNGAP1?
Syngap Research Fund - https://curesyngap1.org/
SYNGAP1 Resources for Newly Diagnosed Families
Pre-register for the 2025 Cure SYNGAP1 Conference in Atlanta
Donate to SRF
Get Involved with SRF
Volunteer with SRF
SRF's State Ambassador Program
Wednesday Warriors
Supporting SYNGAP1 Siblings
SYNGAP1 & Epilepsy
Why Getting a Genetic Diagnosis Matters
How to Get Free Genetic Testing
Special Needs Trusts
Addressing the Symptoms of SYNGAP1
Read more about the repurposed drug Tanganil
Sprint4Syngap 2025
Studies
Clinical Trials (Including Longboard's DEEp OCEAN Trial)
Frazier Eye Study
CHOP NHS
CHCO NHS
Citizen Health
Adults with SYNGAP1 Study
Hispanic Phenotype Study with CHOP
Science Day 2024 videos
CA IHSS (In-Home Supportive Services)
Dr. Chow's Latest SRF Grant Information
Connect with SRF (@curesyngap1):
Facebook
Twitter
Instagram
LinkedIn
TikTok
YouTube
SYNGAP10 Weekly Video Podcast w/ Mike
SynGAP Research Fund Apple Podcast Channel
Family Zoom Meeting (Weekly on Wednesdays, 8PM ET):
cureSYNGAP1.org/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417
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 #Caregiver #Elopement #Behavior #Communication #SelfHelp #Volunteer #Conf25
GUID: a48e9653-b7f4-4ede-b4ce-c0b65035fcc8
Erscheinungsdatum: 31.12.2024, 07:00:00
