This is another open and honest discussion of living with SYNGAP1-related disorders - the difficulties Jackson has faced, the tremendous achievements he has made, and helping each other in the SYNGAP1 community.
If you liked this episode, please give our podcast 5 stars! All episodes are also available at cureSYNGAP1.org/Stories.
Connect with Nicole:
- Follow on Facebook
- Nicole's "Dear Syngap" Post
- Follow on Instagram
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:
- Citizen Health
- Fifth Annual SRF Gala for SYNGAP1 – 2025
- Beacon of Hope: A Benefit for SYNGAP1
- Fourth Annual Scramble for SynGAP – 2025
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
SYNGAP1 Studies and Trials:
- SYNGAP1 Studies
- SYNGAP1 ProMMiS – Prospective Multidisciplinary, Multisite Study for Clinical Excellence: CHOP, CHCO, Stanford
- Clinical Trials
- Frazier Eye Study
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 035 SYNGAP1 Stories, July 1, 2025
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