Eric Moulton, SRF Board Member and SYNGAP1 Dad, talks about Phoebe, schools, receiving her diagnosis, raising $60,000+ for Sprint4Syngap, and more!
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):
- 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: ed@cureSYNGAP1.org
Music: In the Forest… by Lesfm from Pixabay
Episode 033 SYNGAP1 Stories, April 8, 2025
#SYNGAP1StoriesPhoebe #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp33 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #CureSyngap1Conf #SYNGAP1Siblings #Caregiver #Behavior #Communication #SelfHelp #Volunteer #Conf25 #Therapy #Sprint4Syngap
