Show Notes
Samar Katnani, SRF Volunteer and Mom to 3-year-old Syngapian Reema, talks honestly about medications, sharing your story, self-help, anxiety associated with caring for Reema, fake crying, & much more. As with all SYNGAP1 Stories, this one gets very personal, and will benefit all of us, especially others caring for someone with a rare disease. Thank you for listening!
Reema’s Warrior Story
More links:
⁠⁠My Reema
⁠⁠Epilepsy Awareness Day is Every Day for Us Now⁠
Augmentative and Alternative Communication (AAC) device
Follow ⁠⁠⁠⁠⁠⁠Ashley Frye⁠⁠⁠⁠⁠⁠:
⁠SRF Bio⁠
LinkedIn⁠⁠⁠⁠⁠⁠⁠
Facebook⁠⁠⁠
Instagram⁠⁠⁠⁠⁠⁠⁠
⁠⁠⁠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):
⁠⁠⁠⁠⁠⁠Facebook⁠⁠⁠⁠⁠⁠
⁠⁠⁠⁠⁠⁠Twitter⁠⁠⁠⁠⁠⁠
⁠⁠⁠⁠⁠⁠Instagram⁠⁠⁠⁠⁠⁠
⁠⁠⁠⁠⁠⁠LinkedIn⁠⁠⁠⁠⁠⁠
⁠⁠⁠⁠⁠⁠TikTok⁠⁠⁠⁠⁠⁠
⁠⁠⁠⁠⁠⁠SYNGAP10 Weekly Video Podcast⁠⁠⁠⁠⁠⁠ w/ Mike
SYNGAP1 Conference 2023, hosted by SRF - ⁠⁠Registration⁠⁠
Wednesday SRF Family Zoom Meeting:
⁠⁠Syngap.Fund/SRFfam⁠⁠⁠⁠⁠⁠ Meeting ID - 972 0059 2178 Passcode - 848417
Comments: ed@curesyngap1.org
Music: ⁠⁠⁠⁠⁠⁠In the Forest... by Lesfm from Pixabay ⁠⁠⁠⁠⁠
Episode 015 SYNGAP1 Stories, August 22, 2023
#SYNGAP1StoriesReema #MyReema #Syngap #SYNGAP1 #SYNGAP1Stories #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Therapy #Family #Water #Keto #Grandparents #SelfCare