SYNGAP1 Stories

By Syngap Research Fund, 501(c)(3)

SYNGAP1-related disorders is a rare disease that affects Ashley Frye's son Nathan and Rainy Schlosser's daughter Hope. As of January 1, 2025, there are only 1,530 people in the world diagnosed with SY... more

5

2020 ratings

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FAQs about SYNGAP1 Stories:

How many episodes does SYNGAP1 Stories have?

The podcast currently has 33 episodes available.

SYNGAP1 Stories episodes:

November 14, 2023 Special Episode - The Best of Ashley! Clips from the past year's episodes featuring Ashley's story, her advice, and always, her compassion!
Show Notes:
It’s been almost a year of SYNGAP1 Stories with Ashley Frye, and while Ashley buttons up plans for the upcoming SYNGAP1 Conference 2023, hosted by SRF, we have a special episode for you. While Ashley focuses on each episode’s guest and their stories, she also shares anecdotes, opinions, and advice of her own, and we share snippets from the first 21 episodes here. We hope you enjoy, and if you’ve missed any episodes, you can see them all at Syngap.Fund/Stories.
And…remember to send Ashley a belated Happy Birthday message: [email protected]
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
SynGAP Research Fund ⁠⁠Apple Podcast Channel⁠⁠
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 022 SYNGAP1 Stories, November 14, 2023
#SYNGAP1StoriesAshley #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp22 #Nathan #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Therapy #Family #Water #SyngapConf #HappyBirthday
...more
37min
October 31, 2023 FAQs for SRF’s SYNGAP1 Conference 2023 - Operations Mgr. Lauren Perry joined Ashley recently with all you need to know.
Show Notes:
This episode is dedicated to the upcoming SYNGAP1 Conference 2023, hosted by SRF. Pricing goes up after 10/31. Registration closes 11/8. Don't delay! Register now here! Special Thank you to our sponsors, including our Gold-level sponsors, Stoke Therapeutics / Acadia Pharmaceuticals!
Book your rooms here
Order T-shirts here
Friday night Caregiver Dinner tickets here
Lauren Perry - SRF Bio
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
SynGAP Research Fund ⁠Apple Podcast Channel⁠
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 021 SYNGAP1 Stories, October 31, 2023
#SYNGAP1StoriesConf #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp21 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Therapy #Family #Water #SyngapConf #Orlando
...more
16min
October 17, 2023 Nancy Kessler, SRF BOD member, talks about her sister, Caren, the oldest known person living with SYNGAP1 at age 67. A fascinating story - check links in show notes for even more of her story!
Show Notes:
Nancy Kessler is an SRF BOD member, an active volunteer & advocate, and has hosted the SRF Gala honoring her sister Caren Leib for three years, including coming up on October 21, 2023. Caren is the oldest known person diagnosed with SYNGAP1. It is impossible to do justice to her 67 years on this planet, but luckily, Caren starred in her own movie, and Nancy has shared numerous other stories about her sister’s life. We hope you enjoy this unique episode, then check out the links below to learn even more about this family that is so special to the SynGAP Research Fund community.
Nancy’s ⁠SRF Bio⁠
Caren’s ⁠Warrior Story⁠
Celebrating Caren - 15-minute movie; 2-minute trailer; press release;
Video of event held to launch Celebrating Caren
Meeting Caren--Interview with SRF’s Jess Duggan Blog post (Jess’s SRF Bio)
SRF Gala honoring Caren Leib - 2023 webpage; 2022 videos #1 & #2; 2021 summary;
Happy 65th Birthday Caren! - Blog Post
Follow Nancy:
Instagram
LinkedIn
Facebook
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
SynGAP Research Fund Apple Podcast Channel
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 020 SYNGAP1 Stories, October 17, 2023
#SYNGAP1StoriesCaren #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp20 #Caren #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Therapy #Family #Water #CelebratingCaren #Gala
...more
38min
October 03, 2023 Julie Miles, SRF BOD member, talks about Miller's SYNGAP1 journey, getting 'The Call', activities Miller loves, the upcoming Scramble for SynGAP, & patience.
Show Notes:
Julie Miles is an SRF Board Member, Volunteer, and organizes the upcoming event ‘Scramble for SynGAP’ in Traveler’s Rest, SC. Miller, the eldest of her three children with husband Michael, is 8 years old and was diagnosed with SYNGAP1 on July 28, 2020. Ashley talks with Julie about developmental delays, genetic testing, a devastating diagnosis, concerns over self-blame, and the joys of watching Miller enjoy music, baseball, spelling, books, and, of course, swimming!
Julie’s SRF Bio
WSPA-7 News Video
Scramble for SynGAP
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
SynGAP Research Fund Apple Podcast Channel
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 019 SYNGAP1 Stories, October 3, 2023
#SYNGAP1StoriesMiller #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp19 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Therapy #Family #Water #Agression #Behavior #Scramble #ScrambleForSyngap #TheCall #Music #Swimming #Baseball #Spelling #Golf #Patience
...more
48min
September 19, 2023 Sydney & Brett Stelmaszek, SRF volunteers, share their journey with their 3 sons to find the best care for Emmitt, diagnosed w/ SYNGAP1 in 2019.
Sydney & Brett Stelmaszek are heavily involved in the SRF community. Sydney is on the BOD, is a patient advocate, and coordinates our connection with Children’s Hospital of Philadelphia (CHOP). Brett is the driving force behind Cannonball for the Cure (CFTC), an annual fundraiser where SYNGAP1 parents drive cross country live-streaming the entire journey to raise awareness of SYNGAP1. This episode touches on their involvement with SRF as well as raising their son Emmitt, diagnosed with SYNGAP1 while living in South Africa. Their story of excessive seizures, aggression, hope, and love while caring for Emmitt and his two brothers is at times heart-breaking, but always heartwarming.
Emmitt’s Warrior Story
Eating with Emmitt - Blog Post
Flying & Seizing from Africa to Florida - Emmitt's Story
Sydney’s SRF Bio
Follow Sydney & Brett:
Instagram - @UFD_Tech
Twitter - @SydneyStel & @UFDTech
Facebook - Sydney
YouTube - @UFDTech
YouTube - Our Syngap Journey
More links:
Cannonball for the Cure
Natural History Study at CHOP
SPECIAL WEBINAR: $25M Gift to ENDD for SYNGAP1 and STXBP1
MDBR - Blog Post by Sydney
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 018 SYNGAP1 Stories, September 19, 2023
#SYNGAP1StoriesEmmitt #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp18 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Therapy #Family #Water #Agression #Behavior #Cannonball #CFTC #UFD
...more
1h 9min
September 12, 2023 Vicky Arteaga is the Latin America Director of SRF & SYNGAP1 Mom to Amelia. Her efforts help the SYNGAP1 community in Latin America & across the globe.
Show Notes
Victoria Arteaga is the Director of Fondo de Investigación SYNGAP & SYNGAP1 Mom to Amelia. She works endlessly to help the SYNGAP1 community in Latin America & across the globe, attending and presenting at multiple conferences annually. Vicky discusses Amelia’s progress, the joy she brings to the family, a new service dog, SRF’s latest podcast Café SYNGAP1 in Spanish, and the upcoming Second SYNGAP1 Scientific Conference, also in Spanish.
Amelia’s Warrior Story⁠ & Instagram Post
Vicky’s Bio⁠
Follow Vicky:
Instagram - @vickyart78
Instagram Fondo - @syngapamericalatina
Twitter - @VickyAArteaga
More links:
Gomez Family Video (Spanish w/ English subtitles)
Brain & Life Interview - Spanish & English
Café SYNGAP1
Segundo Congreso Científico Syngap1 en Español
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 017 SYNGAP1 Stories, September 12, 2023
#SYNGAP1StoriesAmelia #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp017 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Therapy #Family #Water #ServiceDog
...more
36min
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!
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
...more
52min
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.
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
...more
42min
August 08, 2023 Suzanne Jones, SRF BOD chair & Mom to Syngapian Jansen, talks about raising funds for SRF, including the upcoming SynGAP Soirée, and raising Jansen!
Show Notes:
Suzanne Jones, SRF BOD chair & SYNGAP1 Mom, chats with Ashley about the upcoming Syngap Soirée fundraiser in Atlanta, caregivers, eating out (or not!), Jansen’s behavioral issues as well as her recent speech improvements, and advice to parents to modify their expectations when receiving a rare disease diagnosis.

Connect with Suzanne
SRF BIO
  Facebook
  Instagram
  LinkedIn
Jansen’s Warrior Story
Jansen’s Journey
More links:
  Syngap Soirée, Sparks of Hope - Atlanta, GA, August 26, 2023
  Soirée - Instagram
  Soirée - LinkedIn
  Fundraising
  Article on Jansen in Variantyx
  TV Interview of Jones Family by 11 Alive, Atlanta
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 014 SYNGAP1 Stories, August 8, 2023
#SYNGAP1StoriesJansen #Syngap #SYNGAP1 #SYNGAP1Stories #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Therapy #Family #Water #Fundraising #Horses #HorseRiding #Caregivers
...more
47min
July 25, 2023 This week's guest is Stefanie Decker, SYNGAP1 Mom to 5-year-old Saydee, who has "the best smile"!
Show Notes:
Ashley and SYNGAP1 Mom Stefanie Decker chat about 5-year-old Saydee. Diagnosed in 2020, Saydee loves water, is a local “celebrity”, and has “the best smile’! Listen to their SYNGAP1 journey and how they handle the ups and downs of living with a rare disease.
Stefanie’s SRF BIO
Saydee’s Warrior Story⁠
More links:
  2022 Caregiver Connect - blog written by Stefanie
  CHOP Natural History Study
Follow ⁠⁠⁠⁠⁠Ashley Frye⁠⁠⁠⁠⁠:
⁠⁠⁠⁠⁠LinkedIn⁠⁠⁠⁠⁠
⁠⁠Facebook⁠⁠
⁠⁠⁠⁠⁠Instagram⁠⁠⁠⁠⁠
⁠Nathan’s Warrior Story⁠
SYNGAP1 Stories ⁠⁠Episode 001⁠⁠ - Ashley Frye
SYNGAP1 Stories ⁠⁠Episode 005⁠⁠ - Panda
Panda’s News Story: ⁠⁠Nathan’s Dog⁠⁠
SRF & SYNGAP1 Info:⁠⁠⁠
⁠What is SYNGAP1?⁠ ⁠⁠⁠
⁠ Syngap Research Fund⁠
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
SRF Newsletter Special ⁠5th Birthday Issue⁠ 6/27/23
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 013 SYNGAP1 Stories, July 25, 2023
#SYNGAP1StoriesSaydee #Syngap #SYNGAP1 #SYNGAP1Stories #epilepsy #epilepsyawareness #autism #autismawareness #intellectualdisability #id #anxiety #raredisease #rarediseaseresearch #SynGAPResearchFund #careaboutrare #advocacy #patientadvocacy #neurology #genetictesting #therapy #family #water #sisters #siblings #bestsmile
...more
32min

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How many episodes does SYNGAP1 Stories have?

The podcast currently has 33 episodes available.

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