August 22, 2023

Samar Katnani, SRF Volunteer and Mom to 3yo Syngapian Reema, talks honestly about meds, sharing your story, self-help, fake crying, & much more.

41 minutes

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: [email protected]

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

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