This episode gets very personal about the language of behaviors, a long road to a SYNGAP1 diagnosis, the strength of the SRF community, as well as the personal crisis of Andrew's emotional and physical abuse to which he was subjected when he was ten.
If you liked this episode, please give our podcast 5 stars! All episodes are also available at cureSYNGAP1.org/Stories.
Connect with Jo:
- Andrew's Warrior Story
- [email protected]
- Jo's SRF bio
- Follow Jo on Instagram
- Jo's personal blog page
Jo's SRF Blogs:
Connect with Rainy:
- [email protected]
- Rainy's SRF Bio
- Instagram - @Hope4theCure
- YouTube - @Hope4theCure
- Facebook - Hope SelahMay
- SYNGAP1 Stories Episode 028
- Rainy and Hope's Cross Country Quest
Episode Links:
- Splash For Syngap
- SRF Blog Collection
- SRF Advocacy Page
- California's Self Determination Program
- Traveling with Special Needs Blogs
- EdSource article
- CBS News article
- NBC News article
SRF & SYNGAP1 Info:
- Syngap Research Fund - https://cureSYNGAP1.org/
- What is SYNGAP1-related disorders?
- How Many People Have SYNGAP1?
- SYNGAP1 Resources for Newly Diagnosed Families
- Pre-register for the 2025 Cure SYNGAP1 Conference in Atlanta
- Donate to SRF
- SRF SYNGAP1 Brochure
- Get Involved with SRF
- Volunteer with SRF
- SRF Fundraising Resource Page
- SRF's State Ambassador Program
- Wednesday Warriors
- Supporting SYNGAP1 Siblings
- SYNGAP1 & Epilepsy
- Addressing the Symptoms of SYNGAP1
SYNGAP1 Studies and Trials:
- SYNGAP1 Studies
- SYNGAP1 ProMMiS – Prospective Multidisciplinary, Multisite Study for Clinical Excellence: CHOP, CHCO, Stanford
- Clinical Trials
- Frazier Eye Study
- Citizen Health
More Links:
- Why Getting a Genetic Diagnosis Matters
- How to Get Free Genetic Testing
- Special Needs Trusts
- SRF Grants
- SRF's Medical Considerations Document
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 (bi-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 034 SYNGAP1 Stories, June 5, 2025
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