Zoe Bailey, SRF’s Volunteer Coordinator, talks about finding SRF, volunteering, the SYNGAP1 conference and Zoe’s daughter Kaia.
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.
Connect with Zoe:
Connect with Rainy:
- [email protected]
- 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: [email protected]
Music: In the Forest… by Lesfm from Pixabay
Episode 030 SYNGAP1 Stories, December 31, 2024
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