SYNGAP1 Stories
Co-hosted by Ashley Frye and Rainy Schlosser
Eric Moulton, SRF Board Member and SYNGAP1 Dad, talks about Phoebe, schools, receiving her diagnosis, raising $60,000+ for Sprint4Syngap, and more!
Show NotesEric Moulton talks with Rainy about his daughter Phoebe - going to a French-language school, her chance epilepsy diagnosis, getting involved in finding a cure, and raising over $60,000 for SYNGAP1 research. "Once you have that diagnosis, it really rocks your world, it changes your expectations - then what are you going to do about it?"All episodes are available at cureSYNGAP1.org/Stories.Connect with Eric and Emily:Phoebe's Warrior StoryPhoebe's Fight - Sprint4Syngap Pageeric@cureSYNGAP1.orgebrimsek@cureSYNGAP1.orgEric's SRF bioEmily's SRF bioConnect with Rainy:rainy@cureSYNGAP1.orgRainy's SRF BioInstagram - @Hope4theCureYouTube - @Hope4theCureFacebook - Hope SelahMaySYNGAP1 Stories Episode 028Rainy and Hope's Cross Country QuestSRF & SYNGAP1 Info:Syngap Research Fund - https://cureSYNGAP1.org/What is SYNGAP1-related disorders?How Many People Have SYNGAP1?SYNGAP1 Resources for Newly Diagnosed FamiliesPre-register for the 2025 Cure SYNGAP1 Conference in AtlantaDonate to SRFSRF SYNGAP1 BrochureGet Involved with SRFVolunteer with SRFSRF Fundraising Resource PageSRF's State Ambassador ProgramAdvocate for SYNGAP1Wednesday WarriorsSupporting SYNGAP1 SiblingsSYNGAP1 & EpilepsyAddressing the Symptoms of SYNGAP1SYNGAP1 Studies and Trials:SYNGAP1 StudiesSYNGAP1 ProMMiS – Prospective Multidisciplinary, Multisite Study for Clinical Excellence: CHOP, CHCO, StanfordClinical TrialsFrazier Eye StudyCitizen HealthMore Links:Why Getting a Genetic Diagnosis MattersHow to Get Free Genetic TestingSpecial Needs TrustsSprint4Syngap 2025 (donation page and resource guide)SRF GrantsSRF's Medical Considerations DocumentConnect with SRF (@cureSYNGAP1):FacebookTwitterInstagramLinkedInTikTokYouTubeSYNGAP10 Weekly Video Podcast w/ MikeSynGAP Research Fund Apple Podcast ChannelFamily Zoom Meeting (bi-weekly on Wednesdays, 8PM ET): cureSYNGAP1.org/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417Comments: ed@cureSYNGAP1.orgMusic: In the Forest... by Lesfm from Pixabay Episode 033 SYNGAP1 Stories, April 8, 2025#SYNGAP1StoriesPhoebe #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp33 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #CureSyngap1Conf #SYNGAP1Siblings #Caregiver #Behavior #Communication #SelfHelp #Volunteer #Conf25 #Therapy #Sprint4Syngap
April 8, 2025
Kathryn Helde, SRF’s CSO and SYNGAP1 Mom talks about her adult son Joey, genetic testing, hippotherapy, and Joey’s words!
Show NotesSRF’s CSO Kathryn Helde, PhD talks with Rainy about her son Joey - living in a group home, rock climbing, DIR therapy, genetic testing & reports, and advice on avoiding isolation. "He went to a group home. That took a long time to come to terms with emotionally. That's so much harder than anything else I've ever done."All episodes are available at cureSYNGAP1.org/Stories.Connect with Kathryn:cso@cureSYNGAP1.orgKathryn's SRF bioConnect with Rainy:rainy@cureSYNGAP1.orgRainy's SRF BioInstagram - @Hope4theCureYouTube - @Hope4theCureFacebook - Hope SelahMaySYNGAP1 Stories Episode 028SRF & SYNGAP1 Info:What is SYNGAP1-related disorders?Syngap Research Fund - https://cureSYNGAP1.org/SYNGAP1 Resources for Newly Diagnosed FamiliesPre-register for the 2025 Cure SYNGAP1 Conference in AtlantaDonate to SRFGet Involved with SRFVolunteer with SRFSRF Fundraising Resource PageSRF's State Ambassador ProgramAdvocate for SYNGAP1Wednesday WarriorsSupporting SYNGAP1 SiblingsSYNGAP1 & EpilepsyAddressing the Symptoms of SYNGAP1SYNGAP1 Studies and Trials:SYNGAP1 StudiesSYNGAP1 ProMMiS – Prospective Multidisciplinary, Multisite Study for Clinical ExcellenceClinical TrialsFrazier Eye StudyCitizen HealthMore Links:Heather Mefford, MD, PhDWhy Getting a Genetic Diagnosis MattersHow to Get Free Genetic TestingSpecial Needs TrustsSprint4Syngap 2025 (donation page and resource guide)SRF GrantsSRF Press ReleasesSRF's Medical Considerations DocumentConnect with SRF (@cureSYNGAP1):FacebookTwitterInstagramLinkedInTikTokYouTubeSYNGAP10 Weekly Video Podcast w/ MikeSynGAP Research Fund Apple Podcast ChannelFamily Zoom Meeting (bi-weekly on Wednesdays, 8PM ET): cureSYNGAP1.org/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417Comments: ed@cureSYNGAP1.orgMusic: In the Forest... by Lesfm from Pixabay Episode 032 SYNGAP1 Stories, March 18, 2025#SYNGAP1StoriesJoey #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp32 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #Water #Music #CureSyngap1Conf #SYNGAP1Siblings #Caregiver #Elopement #Behavior #Communication #SelfHelp #Volunteer #Conf25 #RockClimbing #Hippotherapy #Therapy
March 18, 2025
Chelsey and Anthony Navarro, SRF’s Science Writer and Resource Mobilization Director (resp.), talk about daughter Emmy, grieving, preparing for the future, and expanding your community.
Show NotesWe're back with a double interview. Chelsey Navarro, SRF's Science Writer, and Anthony Navarro, SRF's Resource Mobilization Director in charge of fundraising, talk with Rainy about grieving after the diagnosis, finding SRF, volunteering, and reaching out to others to expand your community of support. All episodes are available at cureSYNGAP1.org/Stories.Connect with Chelsey and Anthony:anthony@cureSYNGAP1.orgchelsey@cureSYNGAP1.orgChelsey's SRF bioAnthony's SRF bioLabNomads and Traveling with Special Needs BlogsConnect with Rainy:rainy@cureSYNGAP1.orgRainy's SRF BioInstagram - @Hope4theCureYouTube - @Hope4theCureFacebook - Hope SelahMaySYNGAP1 Stories Episode 028SRF & SYNGAP1 Info:What is SYNGAP1-related disorders?Syngap Research Fund - https://cureSYNGAP1.org/SYNGAP1 Resources for Newly Diagnosed FamiliesPre-register for the 2025 Cure SYNGAP1 Conference in AtlantaDonate to SRFGet Involved with SRFVolunteer with SRFSRF Fundraising Resource PageSRF's State Ambassador ProgramWednesday WarriorsSupporting SYNGAP1 SiblingsSYNGAP1 & EpilepsyAddressing the Symptoms of SYNGAP1SYNGAP1 Studies and Trials:SYNGAP1 StudiesSYNGAP1 ProMMiS – Prospective Multidisciplinary, Multisite Study for Clinical ExcellenceClinical TrialsFrazier Eye StudyCitizen HealthAdults with SYNGAP1 StudyHispanic Phenotype Study with CHOPMore Links:Why Getting a Genetic Diagnosis MattersHow to Get Free Genetic TestingSpecial Needs TrustsSprint4Syngap 2025 (donation page and resource guide)SRF GrantsSRF Press ReleasesSRF's Medical Considerations DocumentTSA CaresBecker's Muscular DystrophyConnect with SRF (@cureSYNGAP1):FacebookTwitterInstagramLinkedInTikTokYouTubeSYNGAP10 Weekly Video Podcast w/ MikeSynGAP Research Fund Apple Podcast ChannelFamily Zoom Meeting (bi-weekly on Wednesdays, 8PM ET): cureSYNGAP1.org/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417Comments: ed@curesyngap1.orgMusic: In the Forest... by Lesfm from Pixabay Episode 031 SYNGAP1 Stories, February 18, 2025#SYNGAP1StoriesEmmy #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp31 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #Water #Music #CureSyngap1Conf #SYNGAP1Siblings #Caregiver #Elopement #Behavior #Communication #SelfHelp #Volunteer #Conf25
February 18, 2025
Zoe Bailey, SRF’s Volunteer Coordinator, talks about finding SRF, volunteering, the SYNGAP1 conference and Zoe’s daughter Kaia.
Show Notes
Zoe Bailey, SRF's Volunteer Coordinator and State Ambassador and Advocacy Lead (California), talks about grieving after the diagnosis, finding SRF, volunteering, and the recent SYNGAP1 Conference in LA. She chats about the importance of self-care as well as Kaia's progress since starting a repurposed drug (Tanganil).
All episodes are available at Syngap.Fund/Stories.
Kaia's Warrior Story
Connect with Zoe:
zoe@cureSYNGAP1.org
Zoe's SRF bio
Zoe's Instagram
Zoe's Facebook
Connect with Rainy:
rainy@cureSYNGAP1.org
Rainy's SRF Bio
Instagram - @Hope4theCure
YouTube - @Hope4theCure
Facebook - Hope SelahMay
SYNGAP1 Stories Episode 028
SRF & SYNGAP1 Info:
What is SYNGAP1?
Syngap Research Fund - https://curesyngap1.org/
SYNGAP1 Resources for Newly Diagnosed Families
Pre-register for the 2025 Cure SYNGAP1 Conference in Atlanta
Donate to SRF
Get Involved with SRF
Volunteer with SRF
SRF's State Ambassador Program
Wednesday Warriors
Supporting SYNGAP1 Siblings
SYNGAP1 & Epilepsy
Why Getting a Genetic Diagnosis Matters
How to Get Free Genetic Testing
Special Needs Trusts
Addressing the Symptoms of SYNGAP1
Read more about the repurposed drug Tanganil
Sprint4Syngap 2025
Studies
Clinical Trials (Including Longboard's DEEp OCEAN Trial)
Frazier Eye Study
CHOP NHS
CHCO NHS
Citizen Health
Adults with SYNGAP1 Study
Hispanic Phenotype Study with CHOP
Science Day 2024 videos
CA IHSS (In-Home Supportive Services)
Dr. Chow's Latest SRF Grant Information
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):
cureSYNGAP1.org/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417
Comments: ed@curesyngap1.org
Music: In the Forest... by Lesfm from Pixabay
Episode 030 SYNGAP1 Stories, December 31, 2024
#SYNGAP1StoriesKaia #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp30 #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 #SelfHelp #Volunteer #Conf25
December 31, 2024
Stacey Miller, 2024 SYNGAP1 Conference Director, chats with new co-host Rainy Schlosser about the conference and Stacey’s son, Jack.
Show Notes
Stacey Miller, SRF's 2024 SYNGAP1 Conference Director and SRF's State Ambassador (Idaho), talks all things Conference, connecting with the SRF community, her son Jack's diagnosis, seizures, behavioral issues, and how her family's SYNGAP1 life impacts Jack's older sibling, Ava.
All episodes are available at Syngap.Fund/Stories.
Jack's Warrior Story
Connect with Stacey
stacey@cureSYNGAP1.org
Stacey's SRF bio
Connect with Rainy:
rainy@cureSYNGAP1.org
Rainy's SRF Bio
Instagram - @Hope4theCure
YouTube - @Hope4theCure
Facebook - Hope SelahMay
SYNGAP1 Stories Episode 028
SRF & SYNGAP1 Info:
What is SYNGAP1?
Syngap Research Fund - https://curesyngap1.org/
SYNGAP1 Resources for Newly Diagnosed Families
Donate to SRF
Get Involved with SRF
SRF's State Ambassador Program
Wednesday Warriors
Supporting SYNGAP1 Siblings
SYNGAP1 & Epilepsy
Why Getting a Genetic Diagnosis Matters
How to Get Free Genetic Testing
Special Needs Trusts
Details for SYNGAP1 Conference 2024
Addressing the Symptoms of SYNGAP1
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
Comments: ed@curesyngap1.org
Music: In the Forest... by Lesfm from Pixabay
Episode 029 SYNGAP1 Stories, November 19, 2024
#SYNGAP1StoriesJack #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp29 #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
November 19, 2024
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:
afrye@curesyngap1.org
Ashley's SRF Bio
LinkedIn
Facebook
Instagram
Nathan’s Warrior Story
SYNGAP1 Stories Episode 001 - Ashley Frye
SRF & SYNGAP1 Info:
What is SYNGAP1?
Syngap Research Fund - https://curesyngap1.org/
SYNGAP1 Resources for Newly Diagnosed Families
Wednesday Warriors
Supporting SYNGAP1 Siblings
Donate - https://Syngap.Fund/Donate
SYNGAP1 & Epilepsy
Why Getting a Genetic Diagnosis Matters
How to Get Free Genetic Testing
Special Needs Trusts
SYNGAP1 Family Day 2023 – A Beacon of Hope! (blog with videos)
Pre-register for SYNGAP1 Conference 2024
Connect with SRF (@curesyngap1):
Facebook
Twitter
Instagram
LinkedIn
TikTok
YouTube
SYNGAP10 Weekly Video Podcast w/ Mike
SynGAP Research Fund Apple Podcast Channel
Family Zoom Meeting (Weekly on Wednesdays, 8PM ET):
Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417
Sibling Zoom Meeting (Monthly on 1st Thursday, 8PM ET):
Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417
Comments: ed@curesyngap1.org
Music: In the Forest... by Lesfm from Pixabay
Episode 028 SYNGAP1 Stories, April 11, 2024
#SYNGAP1StoriesHope #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp28 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #Water #Music #SyngapConf #SYNGAP1Siblings #Caregiver #Elopement #Behavior #Communication #Hope4theCure #Driveathon
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:
jackie@curesyngap1.org
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:
afrye@curesyngap1.org
Ashley's SRF Bio
LinkedIn
Facebook
Instagram
Nathan’s Warrior Story
SYNGAP1 Stories Episode 001 - Ashley Frye
Connect with Jessica:
jjohnson@curesyngap1.org
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: ed@curesyngap1.org
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:
afrye@curesyngap1.org
SRF Bio
LinkedIn
Facebook
Instagram
Nathan’s Warrior Story
SYNGAP1 Stories Episode 001 - Ashley Frye
SRF & SYNGAP1 Info:
What is SYNGAP1?
Syngap Research Fund - https://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: ed@curesyngap1.org
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
SYNGAP1 Stories
SYNGAP1-Related Disorders is a rare disease that affects Ashley Frye's son Nathan and Rainy Schlosser's daughter Hope. Fewer than 1,500 patients have been diagnosed as of September, 2024. There is no treatment. There is no cure. In each episode of SYNGAP1 Stories, one of our hosts will chat with SYNGAP1 parents, volunteers, caregivers, researchers, and partners about their journey with SYNGAP1 in their lives. Their joys and successes, as well as heartaches, will be discussed in this heart-warming series as we support and advocate for the SYNGAP1 community.
Team
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."
Rainy Schlosser
Rainy is a single mom to Hope, 4 years old. Hope was diagnosed with SYNGAP1-Related Disorder (SYNGAP1) on November 27, 2023. She briefly lived in South Africa and Kentucky, but most of her life has been spent in Northern California. A Medical Assistant for many years, Rainy’s dream was always to be a mom. In her early twenties, however, she was told that having children was not possible. Hope was an unexpected surprise, to say the least.
The loneliness and devastation from Hope’s diagnosis is still there, but it is lessened by the love and support from the SYNGAP1 community. Rainy believes that participating in clinical trials, research studies, questionnaires, and raising awareness and funds is how we are going to find a cure. She plans to document her journey in order to pass information about the studies to other families. Having details may reduce the fear of the unknown and encourage more families to participate.
The loneliness and devastation from Hope’s diagnosis is still there, but it is lessened by the love and support from the SYNGAP1 community. Rainy believes that participating in clinical trials, research studies, questionnaires, and raising awareness and funds is how we are going to find a cure. She plans to document her journey in order to pass information about the studies to other families. Having details may reduce the fear of the unknown and encourage more families to participate.
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