Show Notes
In this special episode, guest host Jessica Johnson talks with Jackie Kancir. The two SYNGAP1 Moms discuss education systems, on the farm with Jadyne (Jackie's daughter), make-up, behavioral issues, Jadyne's optimism, and advocating for your children! This episode will educate everyone in the rare disease world. Behavior is communication - listen for details!
See all episodes at Syngap.Fund/Stories.
Connect with Jackie:
Other Links
SRF SYNGAP1 Resources for Education & Advocacy
SYNGAP1: Background, Development, and the Impact on Children
Information on ABA - Applied Behavior Analysis - Link 1; Link 2
Severe Behaviors and Advocacy, SRF Webinar #53 by Jackie
Exploring Advocacy: Finding and Refining Your Voice - webinar hosted by Jackie
Jackie has misc. links news, media, etc. here
Connect with Ashley:
afrye@curesyngap1.org
Ashley's SRF Bio
LinkedIn
Facebook
Instagram
Nathan’s Warrior Story
SYNGAP1 Stories Episode 001 - Ashley Frye
Connect with Jessica:
SRF & SYNGAP1 Info:
What is SYNGAP1?
Syngap Research Fund - https://curesyngap1.org/
SYNGAP1 Resources for Newly Diagnosed Families
Supporting SYNGAP1 Siblings
Donate - https://Syngap.Fund/Donate
SYNGAP1 & Epilepsy
Why Getting a Genetic Diagnosis Matters
How to Get Free Genetic Testing
Special Needs Trusts
SYNGAP1 Family Day 2023 – A Beacon of Hope! (blog with videos)
Pre-register for SYNGAP1 Conference 2024
Connect with SRF (@curesyngap1):
Facebook
Twitter
Instagram
LinkedIn
TikTok
SYNGAP10 Weekly Video Podcast w/ Mike
SynGAP Research Fund Apple Podcast Channel
Family Zoom Meeting (Weekly on Wednesdays, 8PM ET):
Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417
Sibling Zoom Meeting (Monthly on 1st Thursday, 8PM ET):
Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417
Comments: ed@curesyngap1.org
Music: In the Forest... by Lesfm from Pixabay
Episode 027 SYNGAP1 Stories, March 3, 2024
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