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SYNGAP1 StoriesAuthor: 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 with SYNGAP1. There is no cure. In each episode of SYNGAP1 Stories, first developed by Ashley Frye and continued by Rainy and Jo, we 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 and advice, will be discussed in this heart-warming series as we support the SYNGAP1 community. Language: en Genres: Kids & Family, Parenting Contact email: Get it Feed URL: Get it iTunes ID: Get it Trailer: |
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Virginie McNamar, CURE SYNGAP1's President & COO, talks with Rainy about Ty's 2016 Dx, dangerous elopement, benefit of Ty's service dog, and the upcoming CURE SYNGAP1 Conference in Atlanta
Episode 38
Tuesday, 21 October, 2025
This episode is packed with insightful advice and personal stories filled. "All he did was miss milestones. There was nothing medically wrong at the time. So we got genetic testing, and SYNGAP1 came back. For us, it was crushing, because there was no more hope that he would just catch up. Our world was turned upside down."If you liked this episode, please give our podcast 5 stars! All episodes are also available at cureSYNGAP1.org/Stories.Ty's Warrior StoryConnect with Virginie:virginie@cureSYNGAP1.orgVirginie's CURE SYNGAP1 bioLinkedInInstagramFacebookOther Episode Links:Get Involved with SRFVolunteer with SRFPress Release announcing new President/COOEarly Global Leaders of SYNGAP1 CommunityConnect with Rainy:rainy@cureSYNGAP1.orgRainy's CURE SYNGAP1 BioInstagram - @Hope4theCureYouTube - @Hope4theCureFacebook - Hope SelahMaySYNGAP1 Stories Episode 028Rainy and Hope's Cross Country QuestCURE SYNGAP1 & SYNGAP1-Related Disorders Info:CURE SYNGAP1 aka SynGAP Research Fund - https://cureSYNGAP1.org/What are SYNGAP1-related disorders?How Many People Have SYNGAP1?SYNGAP1 Resources for Newly Diagnosed FamiliesDonate to CURE SYNGAP1CURE SYNGAP1 BrochureCURE SYNGAP1 Fundraising Resource PageCURE SYNGAP1's State Ambassador ProgramWednesday WarriorsSupporting SYNGAP1 SiblingsSYNGAP1 & EpilepsyAddressing the Symptoms of SYNGAP1Why Getting a Genetic Diagnosis MattersHow to Get Free Genetic TestingCURE SYNGAP1's Medical Considerations DocumentSYNGAP1 Studies and Trials:SYNGAP1 StudiesSYNGAP1 ProMMiS – Prospective Multidisciplinary, Multisite Study for Clinical Excellence: CHOP, CHCO, StanfordCitizen HealthClinical TrialsFrazier Eye StudyThe EMERALD TrialConnect with CURE SYNGAP1 (@cureSYNGAP1):LinkedInFacebookInstagramYouTubeX/TwitterTikTokSYNGAP10 Weekly Video Podcast w/ MikeCURE SYNGAP1 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 PixabayEpisode 038 SYNGAP1 Stories, October 22, 2025#SYNGAP1StoriesTy #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp38 #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 #CitizenHealth
