Chelsey and Anthony Navarro, SRF’s Science Writer and Resource Mobilization Director (resp.), talk about daughter Emmy, grieving, preparing for the future, and expanding your community.
Show Notes
We’re back with a double interview. Chelsey Navarro, SRF’s Science Writer, and Anthony Navarro, SRF’s Resource Mobilization Director in charge of fundraising, talk with Rainy about grieving after the diagnosis, finding SRF, volunteering, and reaching out to others to expand your community of support.
All episodes are available at cureSYNGAP1.org/Stories.
Connect with Chelsey and Anthony:
- [email protected]
- [email protected]
- Chelsey’s SRF bio
- Anthony’s SRF bio
- LabNomads and Traveling with Special Needs Blogs
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-related disorders?
- 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 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
- Clinical Trials
- Frazier Eye Study
- Citizen Health
- Adults with SYNGAP1 Study
- Hispanic Phenotype Study with CHOP
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 Press Releases
- SRF’s Medical Considerations Document
- TSA Cares
- Becker’s Muscular Dystrophy
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 031 SYNGAP1 Stories, February 18, 2025
#SYNGAP1StoriesEmmy #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp31 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #Water #Music #CureSyngap1Conf #SYNGAP1Siblings #Caregiver #Elopement #Behavior #Communication #SelfHelp #Volunteer #Conf25
