Eric Moulton, SRF Board Member and SYNGAP1 Dad, talks about Phoebe, schools, receiving her diagnosis, raising $60,000+ for Sprint4Syngap, and more!
Update: 2025-04-08
Description
Show Notes
Eric Moulton talks with Rainy about his daughter Phoebe - going to a French-language school, her chance epilepsy diagnosis, getting involved in finding a cure, and raising over $60,000 for SYNGAP1 research. "Once you have that diagnosis, it really rocks your world, it changes your expectations - then what are you going to do about it?"
All episodes are available at cureSYNGAP1.org/Stories.
Connect with Eric and Emily:
- Phoebe's Warrior Story
- Phoebe's Fight - Sprint4Syngap Page
- eric@cureSYNGAP1.org
- ebrimsek@cureSYNGAP1.org
- Eric's SRF bio
- Emily's SRF bio
Connect with Rainy:
- rainy@cureSYNGAP1.org
- Rainy's SRF Bio
- Instagram - @Hope4theCure
- YouTube - @Hope4theCure
- Facebook - Hope SelahMay
- SYNGAP1 Stories Episode 028
- Rainy and Hope's Cross Country Quest
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
- Advocate for SYNGAP1
- 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
- Sprint4Syngap 2025 (donation page and resource guide)
- SRF Grants
- SRF's Medical Considerations Document
Connect with SRF (@cureSYNGAP1):
Comments
In Channel