SYNGAP1 Stories

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

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 wit... more

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FAQs about SYNGAP1 Stories:

How many episodes does SYNGAP1 Stories have?

The podcast currently has 37 episodes available.

SYNGAP1 Stories episodes:

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
July 11, 2023 In this very candid episode, SYNGAP1 Mom Monica Harding opens up to Ashley about her 17-year-old son Jaxon.
Show Notes:
In this very candid episode, SYNGAP1 Mom Monica Harding opens up to Ashley about her 17-year-old son Jaxon. She describes his first seizures, aggression, going to church, the impact of COVID changing his schedule, and how it affected the entire family. This is an important glimpse into the struggles and joys a strong family living with SYNGAP1 faces.
Monica's SRF bio
Jaxon's Warrior Story
More links:
  Jayden’s Juice
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 - ⁠⁠⁠Hotel Reservations⁠⁠⁠
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 012 SYNGAP1 Stories, July 11, 2023
#SYNGAP1StoriesJaxon #Syngap #SYNGAP1 #SYNGAP1Stories #epilepsy #epilepsyawareness #autism #autismawareness #intellectualdisability #id #anxiety #raredisease #rarediseaseresearch #SynGAPResearchFund #careaboutrare #advocacy #patientadvocacy #neurology #genetictesting #therapy #family #militaryfamily
...more
1h 1min
June 27, 2023 Ashley chats with SRF Co-Founder, and SYNGAP1 Mom to Tony, Ashley Evans on the 5th birthday of SRF!
Show Notes:
In Episode 11, our host, Ashley, chats with SRF Co-Founder and SYNGAP1 Mom Ashley Evans to celebrate SRF's 5th birthday! They talk about starting SRF, progress made during the past five years, the dedicated community of SRF volunteers, hope for the future, moving, and, of course, Syngapian Tony and his now 5-year-old brother John.
Ashley's SRF bio
Tony's Warrior Story
More links:
Interview with Kayo Conferences
SRF Introductory Video
A Message to the Newly Diagnosed SynGAP-1 Parent
Meet the Global Village of Syngap Leaders
SRF Newsletter Special 5th Birthday Issue 6/27/23
Pathways to a Cure for SYNGAP1
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 - ⁠⁠⁠Hotel Reservations⁠⁠⁠
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 011 SYNGAP1 Stories, June 27, 2023
#SYNGAP1StoriesTony #Syngap #SYNGAP1 #SYNGAP1Stories #siblings #SYNGAP1siblings #founder #rarediseasesiblings #epilepsy #epilepsyawareness #autism #autismawareness #intellectualdisability #id #anxiety #raredisease #rarediseaseresearch #SynGAPResearchFund #careaboutrare #advocacy #patientadvocacy #neurology #yoga
...more
40min
June 13, 2023 Ashley talks with Danielle Williams, Mom to two daughters in Australia, each with SYNGAP1.
Show Notes:
Episode 10 comes from "down under" as Ashley talks with Danielle Williams, Mom to two daughters, now 13 & 11 years old, each with the same de novo SYNGAP1 mutation. They talk about the heartbreaks of two diagnoses, living with no sleep, connecting to the community, advice to newly diagnosed families, and the joys of cuddling with a teenager.
Jaeli & Dali’s Story
Williams Family Story
Raising Awareness in the Early Days
Follow Danielle: LinkedIn
Danielle's Business Website
Additional Reading - Five Things Parents Need to Know
Danielle Co-Founded the Following Organizations:
  Syngap Research Fund Australia - Facebook Page
  Syngap Global Network
  Genetic Epilepsy Team Australia
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 - ⁠⁠Hotel Reservations⁠⁠
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 010 SYNGAP1 Stories, June 13, 2023
#SYNGAP1SoriesJaeli #SYNGAP1StoriesDali #Syngap #SYNGAP1 #SYNGAP1Stories #siblings #SYNGAP1siblings #rarediseasesiblings #epilepsy #epilepsyawareness #autism #autismawareness #intellectualdisability #id #anxiety #raredisease #rarediseaseresearch #SynGAPResearchFund #careaboutrare #advocacy #patientadvocacy #neurology
...more
44min
May 30, 2023 If you know about SYNGAP1, you likely know this week's guest Lauren Perry, SRF's Operation Mgr. Lauren & Ashley share stories about Will & more than a few laughs!
Show Notes:
In Episode 9, Ashley talks with SYNGAP1 Mom & SRF Operations Mgr. Lauren Perry. These two talk about Lauren’s 2 teenage sons, including Will, diagnosed in 2016, seizures, and Will’s recent successful VNS replacement surgery. They also chat about his typical day, markers, and pride in the SRF community.
Will’s Warrior Story
VNS Therapy
Follow Lauren:
  Twitter
Email: [email protected]
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 - ⁠⁠Hotel Reservations⁠⁠
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 009 SYNGAP1 Stories, May 30, 2023
#SYNGAP1storiesWill #Syngap #SYNGAP1 #SYNGAP1Stories #VNStherapy #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
...more
39min
May 16, 2023 Ashley chats with Certified Christian Life Coach Heather Bensch about her daughter McKaela, who was diagnosed with SYNGAP1 as an adult.
Show Notes:
In Episode 8, Ashley talks with SYNGAP1 Mom Heather Bensch, whose daughter McKaela was diagnosed in her 20s. Heather talks about her struggles getting a diagnosis as well as the joys of raising McKaela. Heather is a certified life coach working with and advocating for the special needs community.
McKaela’s Warrior Story
McKaela’s Spark for Autism Story
McKaela’s Facebook Blog
A Sister’s Promise - a post to McKaela from her sister Plum
Follow Heather:
Facebook
Instagram
Twitter
TikTok
Pinterest
Heather’s Business (Except Defeat Life Coaching) Links:
  Email: [email protected]
Phone: 731/612-8083
Website
Facebook
Grief and Resilience with our SRF Patient Advocacy Group, co-written by Heather
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 - ⁠⁠Hotel Reservations⁠⁠
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 008 SYNGAP1 Stories, May 16, 2023
#SYNGAP1StoriesMcKaela #Syngap #SYNGAP1 #SYNGAP1Stories #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
...more
38min
May 02, 2023 Peter Halliburton, SYNGAP1 Dad & head of SRF's Resource Mobilization team, joins Ashley.
Show Notes:
In episode 7, SYNGAP1 Dad Peter Halliburton joins Ashley to discuss volunteering with SRF in the "early days" compared to now, receiving his son Carter's diagnosis, dealing with seizures, changing doorknobs, and appreciating the joys in Carter's daily life.
Carter's Warrior Story
Follow Peter Halliburton:
Instagram
Twitter
LinkedIn
Contact Peter at [email protected].
More about the Halliburton Family:
Halliburton Family Video
Cook Children's Hospital Article
Blog by Peter - 8 Months on the Rollercoaster of - Mostly - Uncontrolled Epilepsy
Blog by Peter - What Do You Mean, "Cure SYNGAP1"
⁠⁠Cannonball For A Cure⁠
Follow ⁠⁠⁠⁠Ashley Frye⁠⁠⁠⁠:
⁠⁠⁠⁠LinkedIn⁠⁠⁠⁠
⁠Facebook⁠
⁠⁠⁠⁠Instagram⁠⁠⁠⁠
Nathan’s Warrior Story
SynGAP Stories ⁠Episode 001⁠ - Ashley Frye
SynGAP 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 - ⁠⁠Hotel Reservations⁠⁠
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 007 SynGAP Stories, May 2, 2023
#SyngapStoriesCarter #Volunteer #SRFVolunteer #Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
...more
47min

FAQs about SYNGAP1 Stories:

How many episodes does SYNGAP1 Stories have?

The podcast currently has 37 episodes available.

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