29 min listen
Rainy Schlosser, SYNGAP1 Mom to Hope, discusses her 4-year-old daughter's journey in life and across the US for 3 studies!
FromSYNGAP1 Stories
Rainy Schlosser, SYNGAP1 Mom to Hope, discusses her 4-year-old daughter's journey in life and across the US for 3 studies!
FromSYNGAP1 Stories
ratings:
Length:
43 minutes
Released:
Apr 11, 2024
Format:
Podcast episode
Description
Show Notes
Rainy Schlosser is in the middle of a 7,500 mile drive-a-thon to participate in 3 studies to help find a cure for SYNGAP1. She talks with Ashley about the studies, her daughter Hope's incredibly difficult medical journey, what makes Hope happiest, an EEG with Curious George, and the wonderful connections they are making along the way! This is a fundraiser, so please check out Syngap.Fund/Hope4theCure!
All episodes are available at Syngap.Fund/Stories.
Hope's Warrior Story
My SYNGAP1 Drive-a-thon, Hope4theCure
Connect with Rainy & Hope:
Instagram - @Hope4theCure
YouTube - @Hope4theCure
Facebook - Hope SelahMay
Other Links
Cannonball for the Cure
Connect with Ashley:
afrye@curesyngap1.org
Ashley's 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://curesyngap1.org/
SYNGAP1 Resources for Newly Diagnosed Families
Wednesday Warriors
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
YouTube
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: ed@curesyngap1.org
Music: In the Forest... by Lesfm from Pixabay
Episode 028 SYNGAP1 Stories, April 11, 2024
#SYNGAP1StoriesHope #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp28 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #Water #Music #SyngapConf #SYNGAP1Siblings #Caregiver #Elopement #Behavior #Communication #Hope4theCure #Driveathon
Rainy Schlosser is in the middle of a 7,500 mile drive-a-thon to participate in 3 studies to help find a cure for SYNGAP1. She talks with Ashley about the studies, her daughter Hope's incredibly difficult medical journey, what makes Hope happiest, an EEG with Curious George, and the wonderful connections they are making along the way! This is a fundraiser, so please check out Syngap.Fund/Hope4theCure!
All episodes are available at Syngap.Fund/Stories.
Hope's Warrior Story
My SYNGAP1 Drive-a-thon, Hope4theCure
Connect with Rainy & Hope:
Instagram - @Hope4theCure
YouTube - @Hope4theCure
Facebook - Hope SelahMay
Other Links
Cannonball for the Cure
Connect with Ashley:
afrye@curesyngap1.org
Ashley's 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://curesyngap1.org/
SYNGAP1 Resources for Newly Diagnosed Families
Wednesday Warriors
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
YouTube
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: ed@curesyngap1.org
Music: In the Forest... by Lesfm from Pixabay
Episode 028 SYNGAP1 Stories, April 11, 2024
#SYNGAP1StoriesHope #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp28 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #Water #Music #SyngapConf #SYNGAP1Siblings #Caregiver #Elopement #Behavior #Communication #Hope4theCure #Driveathon
Released:
Apr 11, 2024
Format:
Podcast episode
Titles in the series (29)
Our Host - Ashley Frye tells her family's SYNGAP1 Story by SYNGAP1 Stories