Julie Miles, SRF BOD member, talks about Miller’s SYNGAP1 journey, getting ‘The Call’, activities Miller loves, the upcoming Scramble for SynGAP, & patience.
Show Notes:
Julie Miles is an SRF Board Member, Volunteer, and organizes the upcoming event ‘Scramble for SynGAP’ in Traveler’s Rest, SC. Miller, the eldest of her three children with husband Michael, is 8 years old and was diagnosed with SYNGAP1 on July 28, 2020. Ashley talks with Julie about developmental delays, genetic testing, a devastating diagnosis, concerns over self-blame, and the joys of watching Miller enjoy music, baseball, spelling, books, and, of course, swimming!
Julie’s SRF Bio
WSPA-7 News Video
Follow Ashley Frye:
Nathan’s Warrior Story
SYNGAP1 Stories Episode 001 – Ashley Frye
SRF & SYNGAP1 Info:
What is SYNGAP1?
Syngap Research Fund – https://syngapresearchfund.org
Donate – https://Syngap.Fund/Donate
SYNGAP1 & Epilepsy
Why Getting a Genetic Diagnosis Matters
How to Get Free Genetic Testing
Special Needs Trusts
Connect with SRF (@curesyngap1):
SYNGAP10 Weekly Video Podcast w/ Mike
SynGAP Research Fund Apple Podcast Channel
SYNGAP1 Conference 2023, hosted by SRF – Registration
Wednesday SRF Family Zoom Meeting:
Syngap.Fund/SRFfam Meeting ID – 972 0059 2178 Passcode – 848417
Comments: [email protected]
Music: In the Forest… by Lesfm from Pixabay
Episode 019 SYNGAP1 Stories, October 3, 2023
#SYNGAP1StoriesMiller #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp19 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Therapy #Family #Water #Agression #Behavior #Scramble #ScrambleForSyngap #TheCall #Music #Swimming #Baseball #Spelling #Golf #Patience
