SYNGAP1 Stories
Hosted by Ashley Frye
All Episodes
Rainy Schlosser, SYNGAP1 Mom to Hope, discusses her 4-year-old daughter’s journey in life and across the US for 3 studies!
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:
[email protected]
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: [email protected]
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
April 11, 2024
Jackie Kancir, SYNGAP1 Mom and Advocacy Leader for SRF talks about daughter Jadyne and shares advice for all rare disease parents.
Show Notes
In this special episode, guest host Jessica Johnson talks with Jackie Kancir. The two SYNGAP1 Moms discuss education systems, on the farm with Jadyne (Jackie's daughter), make-up, behavioral issues, Jadyne's optimism, and advocating for your children! This episode will educate everyone in the rare disease world. Behavior is communication - listen for details!
See all episodes at Syngap.Fund/Stories.
Jadyne's Warrior Story
Connect with Jackie:
[email protected]
Jackie's SRF bio
LinkedIn
Other Links
SRF SYNGAP1 Resources for Education & Advocacy
SYNGAP1: Background, Development, and the Impact on Children
Information on ABA - Applied Behavior Analysis - Link 1; Link 2
Severe Behaviors and Advocacy, SRF Webinar #53 by Jackie
Exploring Advocacy: Finding and Refining Your Voice - webinar hosted by Jackie
Jackie has misc. links news, media, etc. here
Connect with Ashley:
[email protected]
Ashley's SRF Bio
LinkedIn
Facebook
Instagram
Nathan’s Warrior Story
SYNGAP1 Stories Episode 001 - Ashley Frye
Connect with Jessica:
[email protected]
Kai's Warrior Story
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
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: [email protected]
Music: In the Forest... by Lesfm from Pixabay
Episode 027 SYNGAP1 Stories, March 3, 2024
#SYNGAP1StoriesJadyne #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp27 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #Water #Music #SyngapConf #SYNGAP1Siblings #Caregiver #Elopement #BehaviorIsCommunication
March 3, 2024
Paulina Polanco, SRF volunteer and sibling to twin sisters with SYNGAP1 shares her very personal story of loss of what could have been, love, and hope.
Show Notes
The most moving episode yet! Paulina Polanco is caregiver to her twin sisters Libertad (Libby) and Esperanza (Espy). She delivered a raw, personal address at the 2023 SYNGAP1 Conference hosted by SRF. This episode not only includes that speech, but Ashley talks candidly to Paulina to expand upon her life with twin Syngapians. See all episodes at Syngap.Fund/Stories.
Warrior Story for Libby & Espy
Connect with Paulina:
Instagram
Facebook
Blog Posts Written by Paulina:
SRF – Our Voice is Getting Louder for SYNGAP1!
SYNGAP1 Family Day 2023 – A Beacon of Hope!
Other Links:
SRF Siblings Page
Fondo de Investigación Syngap
Recursos en español
Café Syngap1 Podcast
Connect with Ashley:
[email protected]
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
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
Pre-register for SYNGAP1 Conference 2024
Connect with SRF (@curesyngap1):
Facebook
Twitter
Instagram
LinkedIn
TikTok
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: [email protected]
Music: In the Forest... by Lesfm from Pixabay
Episode 026 SYNGAP1 Stories, February 13, 2024
#SYNGAP1StoriesLibby #SYNGAP1StoriesEspy #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp26 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #Water #Music #SyngapConf #SYNGAP1Siblings #Caregiver #WinnieThePooh
February 13, 2024
Jessica Johnson, SRF Volunteer and SYNGAP1 Mom shares her positive outlook on raising her son Kai.
Show Notes
Living with SYNGAP1 can be challenging, but approaching it with a positive outlook is important. Listen to Jessica Johnson chat with Ashley to talk about her son Kai, who has SYNGAP1. They discuss iPads, music & guitars, finding your community, and more. See all episodes at Syngap.Fund/Stories.
Kai's Warrior Story
Connect with Jess:
Instagram
Instagram (Kai's account)
Connect with Ashley:
[email protected]
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
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
Pre-register for SYNGAP1 Conference 2024
Connect with SRF (@curesyngap1):
Facebook
Twitter
Instagram
LinkedIn
TikTok
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: [email protected]
Music: In the Forest... by Lesfm from Pixabay
Episode 025 SYNGAP1 Stories, January 30, 2024
#SYNGAP1StoriesKai #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp25 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Therapy #Family #Water #Music #Guitars #SyngapConf #Advice #RareAdvice #SYNGAP1Siblings #Positivity
January 30, 2024
Hilary Volz, SYNGAP1 Mom to Brycen, talks about Disney movies, genetic testing, behaviors, & more!
Show Notes:
We open 2024 where we left off in 2023 - great advice! Hilary Volz joins Ashley to talk about her son Brycen, who has SYNGAP1. They discuss Brycen's favorite (and not so favorite) Disney movies, genetic testing, severe behaviors, his super sibling Kallen, and more. See all episodes at Syngap.Fund/Stories.
Brycen's Warrior Story
Connect with Hillary:
Facebook
Instagram
Other Episode Links:
Fragile X
Helen DeVos Children's Hospital Intensive Feeding Clinic
Connect with Ashley:
[email protected]
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
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
Pre-register for SYNGAP1 Conference 2024
Connect with SRF (@curesyngap1):
Facebook
Twitter
Instagram
LinkedIn
TikTok
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: [email protected]
Music: In the Forest... by Lesfm from Pixabay
Episode 024 SYNGAP1 Stories, January 9, 2023
#SYNGAP1StoriesBrycen #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp24 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Therapy #Family #Water #SyngapConf #Advice #RareAdvice #DisneyMovies #FragileX #SYNGAP1Siblings #ABATherapy
January 9, 2024
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:
[email protected]
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 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
November 28, 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
November 14, 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
October 31, 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
October 17, 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
October 3, 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
September 19, 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
September 12, 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
August 30, 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
August 22, 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
August 8, 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
July 25, 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
July 11, 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
June 27, 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
June 13, 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
May 30, 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
May 16, 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
May 2, 2023
It’s Ashley’s turn, as she talks about her beginnings of volunteering for SRF and what she’s working on now! Pickleball, anyone?
Show Notes:
In episode 6, we turn the tables on our host. Ashley talks about volunteering for SynGAP Research Fund, organizing the SYNGAP1 Conference 2023 hosted by SRF, and the first SynGAP Paddle Slap coming up on May 6 in Oxford, MS.
SYNGAP1 Conference 2023, hosted by SRF - Hotel Reservations
SynGAP Paddle Slap - https://Syngap.Fund/Paddle23
USA Pickleball
The Oxford Park Commission
The Farmstead, Oxford, MS
Live Band - Rocket 88
Bounce Castles donated by Blue Line Inflatables
Follow Ashley Frye:
Facebook
LinkedIn
Instagram
Nathan’s Warrior Story: https://www.syngapresearchfund.org/syngap-warrior/nathan
SynGAP Stories Episode 001 - Ashley Frye
SynGAP Stories Episode 005 - Panda
Panda’s News Story: Nathan’s Dog
Cannonball For A Cure
What is SYNGAP1: https://www.syngapresearchfund.org/home/what-is-syngap1
Syngap Research Fund: https://www.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
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 006 SynGAP Stories, April 18, 2023
#SyngapStoriesPaddleSlap #SRFConference #Pickleball #Volunteer #Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
April 18, 2023
How Can a Service Dog Help Your SYNGAP1 or Other Rare Disease Child? Listen as Cecilia Anastos Chats with Ashley.
Show Notes:
In Episode 5, Ashley talks with Cecilia Anastos, Founder and Lead Trainer of Meridus K9 & Equine LLC, providing service and emotional support dogs among other services. Panda was recently placed with the Frye family to be Ashley's son Nathan's service dog. In this episode, Cecilia answers the questions, “Can a service dog replace a human?”, “What are the most important things service dogs do?” and “Can service dogs save a child’s life?”
Reach Cecilia at: [email protected]
Website: www.meridusk9.com
LinkedIn: http://www.linkedin.com/in/ceciliaanastos
Previous SRF Webinars: Webinar #52 and Webinar #65
Panda’s News Story: Nathan’s Dog
What is SYNGAP1: https://www.syngapresearchfund.org/home/what-is-syngap1
Syngap Research Fund: https://www.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
Follow Ashley Frye:
Facebook
LinkedIn
Instagram
Nathan’s Warrior Story: https://www.syngapresearchfund.org/syngap-warrior/nathan
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 005 SynGAP Stories, April 4, 2023
#SyngapStoriesPANDA #SyngapStoriesServiceDogs #ServiceDogs #Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
April 4, 2023
Kali Worth, SYNGAP1 Mom to Kailyn (Kai) is Ashley’s guest.
Show Notes:
In Episode 4, Ashley talks with SYNGAP1 Mom Kali Worth. Kali talks about missing milestones, epilepsy, genetic testing, expanding your community as a rare parent as well as the joys Kailyn (Kai) brings to her life.
Kai’s Warrior Story: https://www.syngapresearchfund.org/syngap-warrior/kai
Read Kali's SRF bio, blogs and a video of Kai’s story here.
Follow Kali on Twitter: https://twitter.com/WorthKali
What is SYNGAP1: https://www.syngapresearchfund.org/home/what-is-syngap1
Syngap Research Fund: https://www.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
Follow Ashley Frye:
Facebook
LinkedIn
Instagram
Nathan’s Warrior Story: https://www.syngapresearchfund.org/syngap-warrior/nathan
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 004 SynGAP Stories, March 21, 2023
#SyngapStoriesKAILYN #Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
March 21, 2023
Ashley’s Guest – SRF Community Activation Leader Corey Baysden
Show Notes:
In Episode 3, Ashley talks with SYNGAP1 Mom Corey Baysden. Corey talks about the joys of raising Saylor as well dealing with a difficult diagnosis and finding a community in SRF. As SRF Community Activation Leader, Corey communicates with and advocates for many newly diagnosed families. You can reach her at [email protected].
Saylor’s Warrior Story: https://www.syngapresearchfund.org/syngap-warrior/saylor
Follow Corey Baysden:
Facebook
LinkedIn
Instagram
Twitter
What is SYNGAP1: https://www.syngapresearchfund.org/home/what-is-syngap1
Syngap Research Fund: https://www.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):
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SYNGAP10 Weekly Video Podcast w/ Mike
Follow Ashley Frye:
Facebook
LinkedIn
Instagram
Nathan’s Warrior Story: https://www.syngapresearchfund.org/syngap-warrior/nathan
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 003 SynGAP Stories, March 7, 2023
#Syngap #SYNGAP1 #epilepsy #autism #raredisease
March 7, 2023
Ashley talks to SRF Co-founder Mike Graglia
Show Notes:
Ashley talks with SRF Co-founder and Syngap Dad Mike Graglia. Mike talks about founding SRF with his wife, Ashley Evans & raising a Syngapian child. He offers his best advice to new SYNGAP1 parents.
What is SYNGAP1: https://www.syngapresearchfund.org/home/what-is-syngap1
Syngap Research Fund: https://www.syngapresearchfund.org/
Donate: https://www.syngapresearchfund.org/donate/donate#googtrans(en|en)
Mike Graglia: https://www.syngapresearchfund.org/team/mike-graglia
Ashley Evans: https://www.syngapresearchfund.org/team/ashley-evans-mphil-mba-co-founder
Mike & Ashley’s Story: https://youtu.be/lLO2hsAi4-M & feature in Newsweek: https://www.newsweek.com/my-son-syngap1-rare-genetic-condition-1776362
Tony’s Warrior Story: https://www.syngapresearchfund.org/syngap-warrior/tony
Number Blocks: https://www.netflix.com/title/81272431
Connect with SRF:
Facebook: https://www.facebook.com/cureSYNGAP1
Twitter: https://twitter.com/intent/user?screen_name=cureSYNGAP1
Instagram: https://www.instagram.com/curesyngap1/
LinkedIn: https://www.linkedin.com/company/curesyngap1/
TikTok: https://www.tiktok.com/@curesyngap1
SYNGAP10 Weekly Video Podcast with Mike: https://www.youtube.com/playlist?list=PLjpr3a14_ls38mAeOZeErFpEjbrw5mGhR
Follow Ashley Frye:
Facebook: https://www.facebook.com/ashley.hewettfrye
LinkedIn: https://www.linkedin.com/in/ashley-frye-62095582/
Instagram: https://www.instagram.com/fryemom/
Nathan’s Warrior Story: https://www.syngapresearchfund.org/syngap-warrior/nathan
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 002 SynGAP Stories, February 21, 2023
#Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
February 21, 2023
Our Host – Ashley Frye tells her family’s SYNGAP1 Story
Show Notes:
Host Ashley Frye discusses her family's journey to a SYNGAP1 diagnosis for her son Nathan and living with and caring for a young child with a rare disease.
What is SYNGAP1: https://www.syngapresearchfund.org/home/what-is-syngap1
Syngap Research Fund: https://www.syngapresearchfund.org/
Follow Ashley:
Facebook: https://www.facebook.com/ashley.hewettfrye
LinkedIn: https://www.linkedin.com/in/ashley-frye-62095582/
Nathan’s Warrior Story: https://www.syngapresearchfund.org/syngap-warrior/nathan
Connect with SRF:
Facebook: https://www.facebook.com/cureSYNGAP1
Twitter: https://twitter.com/intent/user?screen_name=cureSYNGAP1
Instagram: https://www.instagram.com/curesyngap1/
LinkedIn: https://www.linkedin.com/company/18940628/admin/
TikTok: https://www.tiktok.com/@curesyngap1
SYNGAP10 Weekly Video Podcast with Mike: https://www.youtube.com/playlist?list=PLjpr3a14_ls38mAeOZeErFpEjbrw5mGhR
Cannonball For A Cure: https://www.syngapresearchfund.org/post/pr-12-ufd-tech-hosts-second-annual-cannonball-for-the-cure-charity-stream-to-benefit-syngap-research-fund
Wednesday Zoom Meeting for Syngap Families:
Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417
Comments and suggestions: [email protected]
Music: In the Forest... by Lesfm from Pixabay
Episode 001 SynGAP Stories, February 7, 2023
#Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
February 7, 2023
Trailer
Welcome to Syngap Stories, a podcast dedicated to stories from the Syngap community about living with a rare, untreatable genetic disorder.
What is SYNGAP1: https://www.syngapresearchfund.org/home/what-is-syngap1
Syngap Research Fund: https://www.syngapresearchfund.org/
Follow Ashley:
Facebook: https://www.facebook.com/ashley.hewettfrye
LinkedIn: https://www.linkedin.com/in/ashley-frye-62095582/
Connect with SRF:
Facebook: https://www.facebook.com/cureSYNGAP1
Twitter: https://twitter.com/intent/user?screen_name=cureSYNGAP1
Instagram: https://www.instagram.com/curesyngap1/
LinkedIn: https://www.linkedin.com/company/18940628/admin/
TikTok: https://www.tiktok.com/@curesyngap1
SYNGAP10 Weekly Video Podcast with Mike: https://www.youtube.com/playlist?list=PLjpr3a14_ls38mAeOZeErFpEjbrw5mGhR
Wednesday Zoom Meeting for Syngap Families:
Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417
Comments and suggestions: [email protected]
Music: In the Forest... by Lesfm from Pixabay
Episode 000 SynGAP Stories, January 22, 2023
#Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
January 24, 2023
About SYNGAP1 Stories
SYNGAP1 is a rare disease that affects Ashley Frye's son Nathan. Fewer than 1,200 patients have been diagnosed as of January, 2023. There is no treatment. There is no cure. In each episode of SYNGAP1 Stories, Ashley will chat with SynGap parents, volunteers, caregivers, researchers and partners about their journey with SYNGAP1 in their lives. Their joys and successes, as well as heartaches, will be discussed in this heart-warming series as we support the SynGap community.
Host
Ashley Frye
Ashley has an MBA and is the mother of two boys, Liam and Nathan. She lives in Oxford, MS, where she is using her professional experience to bring awareness and fundraising abilities to SRF.
Ashley's son Nathan has been developmentally delayed since he was six months old. In December of 2020 at age 3-1/2, he was diagnosed with SYNGAP1 after an EEG identified epileptic activity. Per Ashley, "I've been a staunch advocate for Nathan his entire life, knowing that something just wasn't right. Now that we have a diagnosis, I will be an even harder working advocate for him and all the other SYNGAP1 families until we have a clinical trial for therapeutic treatment."