Home
Categories
EXPLORE
True Crime
Comedy
Society & Culture
Business
Sports
History
Fiction
About Us
Contact Us
Copyright
© 2024 PodJoint
00:00 / 00:00
Sign in

or

Don't have an account?
Sign up
Forgot password
https://is1-ssl.mzstatic.com/image/thumb/Podcasts221/v4/d4/15/56/d415568c-e3a0-1bd5-d0f7-ec89be5098e2/mza_2854289781293471546.jpg/600x600bb.jpg
SYNGAP1 Stories
Syngap Research Fund, 501(c)(3)
39 episodes
3 days ago
SYNGAP1-related disorders are rare genetic disorders that affect Rainy Schlosser's daughter Hope and Jo Ashline's son Andrew. As of July 1, 2025, there are only 1,636 people in the world diagnosed with SYNGAP1. There is no cure. In each episode of SYNGAP1 Stories, first developed by Ashley Frye and continued by Rainy and Jo, we chat with SYNGAP1 parents, volunteers, caregivers, researchers, and partners about their journey with SYNGAP1 in their lives. Their joys and successes, as well as heartaches and advice, will be discussed in this heart-warming series as we support the SYNGAP1 community.
Show more...
Parenting
Kids & Family
RSS
All content for SYNGAP1 Stories is the property of Syngap Research Fund, 501(c)(3) and is served directly from their servers with no modification, redirects, or rehosting. The podcast is not affiliated with or endorsed by Podjoint in any way.
SYNGAP1-related disorders are rare genetic disorders that affect Rainy Schlosser's daughter Hope and Jo Ashline's son Andrew. As of July 1, 2025, there are only 1,636 people in the world diagnosed with SYNGAP1. There is no cure. In each episode of SYNGAP1 Stories, first developed by Ashley Frye and continued by Rainy and Jo, we chat with SYNGAP1 parents, volunteers, caregivers, researchers, and partners about their journey with SYNGAP1 in their lives. Their joys and successes, as well as heartaches and advice, will be discussed in this heart-warming series as we support the SYNGAP1 community.
Show more...
Parenting
Kids & Family
https://d3t3ozftmdmh3i.cloudfront.net/staging/podcast_uploaded_episode/36412135/36412135-1701122508721-16d20796949d1.jpg
Special Episode - On Giving Tuesday, we present the best advice from SYNGAP1 Stories guests from the past year!
SYNGAP1 Stories
50 minutes 8 seconds
1 year ago
Special Episode - On Giving Tuesday, we present the best advice from SYNGAP1 Stories guests from the past year!

Show Notes:

This is the Best Episode of 2023! Every SYNGAP1 parent had a story to tell Ashley and advice for others. This compilation has it all! Good advice is good at any time, no matter how many times you hear it, and this episode has a lot of advice that relates to all in the Rare Disease Community. We hope you enjoy, and if you’ve missed any episodes, you can see them all at ⁠Syngap.Fund/Stories⁠.

Please help us on Giving Tuesday so that we can continue our effort to find a cure for all who are living with SYNGAP1 - donate at https://Syngap.Fund/GT23

Follow ⁠⁠⁠⁠⁠⁠Ashley Frye⁠⁠⁠⁠⁠⁠:

⁠⁠afrye@curesyngap1.org⁠⁠

⁠⁠⁠⁠⁠⁠⁠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

SynGAP Research Fund ⁠⁠⁠Apple Podcast Channel⁠⁠⁠

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 023 SYNGAP1 Stories, November 28, 2023

#SYNGAP1StoriesAshley #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp23 #Nathan #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Therapy #Family #Water #SyngapConf #Advice #RareAdvice #SRFGivingTuesday #GivingTuesday

SYNGAP1 Stories
SYNGAP1-related disorders are rare genetic disorders that affect Rainy Schlosser's daughter Hope and Jo Ashline's son Andrew. As of July 1, 2025, there are only 1,636 people in the world diagnosed with SYNGAP1. There is no cure. In each episode of SYNGAP1 Stories, first developed by Ashley Frye and continued by Rainy and Jo, we chat with SYNGAP1 parents, volunteers, caregivers, researchers, and partners about their journey with SYNGAP1 in their lives. Their joys and successes, as well as heartaches and advice, will be discussed in this heart-warming series as we support the SYNGAP1 community.