August 30, 2023

Mike Graglia, SRF Managing Dir. & SYNGAP1 Dad to Tony. Going back to school can be difficult. Tony's experience shows that it's so much harder for kids with SYNGAP1!

51 minutes

Show Notes

Going back to school is difficult for most kids and their families, but for those living with SYNGAP1 and other rare diseases, it is especially hard! Mike Graglia, SRF Co-Founder & Managing Director and Dad to Syngapian Tony, joins Ashley again to talk about a crisis his family experienced on Tony's first day at a new school. It's easy to talk about the joy we experience with our special kids, but it can be gut-wrenching to discuss (and hear about) the hard days. That makes it so important to share these stories - to make sure our community and those around us can prepare for these possibilities to the best of our abilities. Please, if you have a story to share, email us at [email protected]. Thank you for listening!

Tony’s Warrior Story

Mike Graglia’s Bio

Mike & Ashley’s Story

SYNGAP1 Stories ⁠⁠⁠⁠⁠⁠Episode 002⁠⁠⁠⁠⁠⁠ - Mike Graglia

More links:

Jackie Kancir’s Bio

Webinar - Severe Behaviors & Advocacy (with Jackie Kancir)

Blog Post - Stella Stays In School: Getting Educational Needs Met

Blog Post - A Message To The Newly Diagnosed SynGAP-1 Parent

Webinar - Your teenager was just diagnosed with SYNGAP1, processing through a new lens

Syngap Soirée

Ashley’s Soirée Video

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 016 SYNGAP1 Stories, August 30, 2023

#SYNGAP1StoriesTony #SynGAP #SYNGAP1 #SYNGAP1Stories #SYNGAP1Stories16 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Therapy #Family #Water #Keto #School #FirstDayOfSchool #NewSchool

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