Jackie Kancir, SYNGAP1 Mom and Advocacy Leader for SRF talks about daughter Jadyne and shares advice for all rare disease parents.
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:
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: [email protected]
Music: In the Forest… by Lesfm from Pixabay
Episode 027 SYNGAP1 Stories, March 3, 2024
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