SYNGAP1 Stories
Syngap Research Fund, 501(c)(3)
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
OCT 22, 202546 MIN
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
OCT 22, 202546 MIN
Description
<p>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."</p><p><br></p><p>If you liked this episode, please give our podcast 5 stars! All episodes are also available at <a href="https://cureSYNGAP1.org/Stories" target="_blank" rel="ugc noopener noreferrer">cureSYNGAP1.org/Stories</a>.</p><p><a href="https://curesyngap1.org/syngap-warriors/ty/" target="_blank" rel="ugc noopener noreferrer"></a></p><p><a href="https://curesyngap1.org/syngap-warriors/ty/" target="_blank" rel="ugc noopener noreferrer"><strong>Ty's Warrior Story</strong></a></p><p><br></p><p><strong>Connect with Virginie:</strong></p><ul><li><a href="mailto:[email protected]" target="_blank" rel="ugc noopener noreferrer">[email protected]</a></li><li><a href="https://curesyngap1.org/team/international-ambassadors/virginie-mcnamar/" target="_blank" rel="ugc noopener noreferrer">Virginie's CURE SYNGAP1 bio</a></li><li><a href="https://www.linkedin.com/in/virginie-mcnamar-b349b24a/" target="_blank" rel="ugc noopener noreferrer">LinkedIn</a></li><li><a href="https://www.instagram.com/virginiemcnamar/" target="_blank" rel="ugc noopener noreferrer">Instagram</a></li><li><a href="https://www.facebook.com/virginie.herradormcnamar" target="_blank" rel="ugc noopener noreferrer">Facebook</a></li></ul><p><br></p><p><strong>Other Episode Links:</strong></p><ul><li><a href="https://curesyngap1.org/get-involved/" target="_blank" rel="ugc noopener noreferrer">Get Involved with SRF</a></li><li><a href="https://cureSYNGAP1.org/Vol" target="_blank" rel="ugc noopener noreferrer">Volunteer with SRF</a></li><li><a href="https://www.eurekalert.org/news-releases/1066143" target="_blank" rel="ugc noopener noreferrer">Press Release announcing new President/COO</a></li><li><a href="https://curesyngap1.org/blog/meet-the-globalvillage-of-syngapleaders/" target="_blank" rel="ugc noopener noreferrer">Early Global Leaders of SYNGAP1 Community</a></li></ul><p><br></p><p><strong>Connect with Rainy:</strong></p><ul><li><a href="mailto:[email protected]" target="_blank" rel="ugc noopener noreferrer">[email protected]</a></li><li><a href="https://curesyngap1.org/team/state-ambassadors/rainy-schlosser/" target="_blank" rel="ugc noopener noreferrer">Rainy's CURE SYNGAP1 Bio</a></li><li>Instagram - <a href="https://www.instagram.com/hope4thecure/" target="_blank" rel="ugc noopener noreferrer"></a><a href="https://www.instagram.com/hope4thecure/" target="_blank" rel="ugc noopener noreferrer">@Hope4theCure</a></li><li>YouTube - <a href="https://youtube.com/@Hope4theCure?si=NVINJb1y5enGKq5c" target="_blank" rel="ugc noopener noreferrer">@Hope4theCure</a></li><li>Facebook - <a href="https://www.facebook.com/hope.selahmay.3" target="_blank" rel="ugc noopener noreferrer">Hope SelahMay</a></li><li><em>SYNGAP1 </em>Stories <a href="https://curesyngap1.org/podcasts/syngap1-stories/rainy-schlosser/" target="_blank" rel="ugc noopener noreferrer">Episode 028</a></li><li><a href="https://donate.curesyngap1.org/campaign/672796/donate" target="_blank" rel="ugc noopener noreferrer">Rainy and Hope's Cross Country Quest</a></li></ul><p><br></p><p><strong>CURE SYNGAP1 & </strong><em><strong>SYNGAP1</strong></em><strong>-Related Disorders Info</strong>:<a href="https://www.syngapresearchfund.org/cannonball"></a><a href="https://www.syngapresearchfund.org/cannonball" target="_blank" rel="ugc noopener noreferrer"></a></p><ul><li><a href="https://curesyngap1.org/what-is-syngap1/" target="_blank" rel="ugc noopener noreferrer"></a>CURE SYNGAP1 aka SynGAP Research Fund - <a href="https://curesyngap1.org/" target="_blank" rel="ugc noopener noreferrer">https://cureSYNGAP1.org/</a></li><li><a href="https://curesyngap1.org/what-is-syngap1/" target="_blank" rel="ugc noopener noreferrer">What are <em>SYNGAP1</em>-related disorders?</a><a href="https://www.syngapresearchfund.org/home/what-is-syngap1" target="_blank" rel="ugc noopener noreferrer"></a></li><li><a href="https://curesyngap1.org/how-many-people-have-syngap1-census/" target="_blank" rel="ugc noopener noreferrer">How Many People Have SYNGAP1?</a></li><li><a href="https://curesyngap1.org/syngap1-resources-for-newly-diagnosed-families/" target="_blank" rel="ugc noopener noreferrer"><em>SYNGAP1</em> Resources for Newly Diagnosed Families</a></li><li><a href="https://curesyngap1.org/donate/" target="_blank" rel="ugc noopener noreferrer">Donate to CURE SYNGAP1</a></li><li><a href="https://drive.google.com/file/d/1_itsKq1AICFR5WONIpsWyk6byuD86DSZ/view?usp=sharing" target="_blank" rel="ugc noopener noreferrer">CURE SYNGAP1 Brochure</a></li><li><a href="https://curesyngap1.org/get-involved/" target="_blank" rel="ugc noopener noreferrer"></a><a href="https://curesyngap1.org/srf-fundraising-resources/" target="_blank" rel="ugc noopener noreferrer">CURE SYNGAP1 Fundraising Resource Page</a></li><li><a href="https://curesyngap1.org/team/state-ambassadors/" target="_blank" rel="ugc noopener noreferrer">CURE SYNGAP1's State Ambassador Program</a></li><li><a href="https://curesyngap1.org/syngap-warriors/" target="_blank" rel="ugc noopener noreferrer">Wednesday Warriors</a></li></ul><ul><li><a href="https://curesyngap1.org/sibling-support/" target="_blank" rel="ugc noopener noreferrer">Supporting <em>SYNGAP1</em> Siblings</a></li><li><a href="https://curesyngap1.org/syngap1-epilepsy/" target="_blank" rel="ugc noopener noreferrer"><em>SYNGAP1</em> & Epilepsy</a></li><li><a href="https://curesyngap1.org/syngap1-treatment/" target="_blank" rel="ugc noopener noreferrer">Addressing the Symptoms of <em>SYNGAP1</em></a></li><li><a href="https://curesyngap1.org/blog/why-getting-a-genetic-diagnosis-matters-especially-for-syngap1/" target="_blank" rel="ugc noopener noreferrer">Why Getting a Genetic Diagnosis Matters</a></li><li><a href="https://curesyngap1.org/blog/how-to-get-free-genetic-testing-for-people-with-autism-special-needs-epilepsy/" target="_blank" rel="ugc noopener noreferrer">How to Get Free Genetic Testing</a></li><li><a href="https://curesyngap1.org/press-releases/" target="_blank" rel="ugc noopener noreferrer"></a><a href="https://drive.google.com/file/d/1bVHV0O1Lv6H8pXGMR6nbYUKWROIQO_yv/view#googtrans(en|en)" target="_blank" rel="ugc noopener noreferrer">CURE SYNGAP1's Medical Considerations Document</a></li></ul><p><br></p><p><em><strong>SYNGAP1</strong></em><strong> Studies and Trials</strong>:<a href="https://www.syngapresearchfund.org/cannonball" target="_blank" rel="ugc noopener noreferrer"></a></p><ul><li><a href="https://cureSYNGAP1.org/Studies" target="_blank" rel="ugc noopener noreferrer"><em>SYNGAP1</em> Studies</a></li><li><a href="https://curesyngap1.org/resources/studies/syngap1-prommis/" target="_blank" rel="ugc noopener noreferrer"><em>SYNGAP1 </em> ProMMiS</a> – Prospective Multidisciplinary, Multisite Study for Clinical Excellence: CHOP, CHCO, Stanford</li><li><a href="https://cureSYNGAP1.org/CT" target="_blank" rel="ugc noopener noreferrer"></a><a href="https://cureSYNGAP1.org/Citizen" target="_blank" rel="ugc noopener noreferrer">Citizen Health</a></li><li><a href="https://cureSYNGAP1.org/CT" target="_blank" rel="ugc noopener noreferrer">Clinical Trials</a></li><li><a href="https://cureSYNGAP1.org/Eye2" target="_blank" rel="ugc noopener noreferrer">Frazier Eye Study</a></li><li><a href="https://curesyngap1.org/clinical-trials/" target="_blank" rel="ugc noopener noreferrer">The EMERALD Trial</a></li></ul><p><br></p><p><strong>Connect with CURE SYNGAP1 (@cureSYNGAP1):</strong></p><ul><li><a href="https://www.facebook.com/cureSYNGAP1" target="_blank" rel="ugc noopener noreferrer"></a><a href="https://www.linkedin.com/company/curesyngap1/" target="_blank" rel="ugc noopener noreferrer">LinkedIn</a></li><li><a href="https://www.facebook.com/cureSYNGAP1" target="_blank" rel="ugc noopener noreferrer">Facebook</a></li><li><a href="https://www.instagram.com/curesyngap1/" target="_blank" rel="ugc noopener noreferrer">Instagram</a></li><li><a href="https://www.linkedin.com/company/curesyngap1/" target="_blank" rel="ugc noopener noreferrer"></a><a href="https://www.youtube.com/@CureSYNGAP1" target="_blank" rel="ugc noopener noreferrer">YouTube</a></li><li><a href="https://curesyngap1.org/podcasts/syngap10/" target="_blank" rel="ugc noopener noreferrer"></a><a href="https://twitter.com/cureSYNGAP1" target="_blank" rel="ugc noopener noreferrer">X/Twitter</a></li><li><a href="https://www.tiktok.com/@curesyngap1" target="_blank" rel="ugc noopener noreferrer">TikTok</a></li><li><a href="https://www.youtube.com/@CureSYNGAP1" target="_blank" rel="ugc noopener noreferrer"></a><a href="https://curesyngap1.org/podcasts/syngap10/" target="_blank" rel="ugc noopener noreferrer">SYNGAP10 Weekly Video Podcast </a>w/ Mike</li><li>CURE SYNGAP1 <a href="https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917" target="_blank" rel="ugc noopener noreferrer">Apple Podcast Channel</a></li></ul><p><br></p><p><strong>Family Zoom Meeting</strong> (bi-weekly on Wednesdays, 8PM ET): </p><ul><li><a href="https://cureSYNGAP1.org/SRFfam" target="_blank" rel="ugc noopener noreferrer">cureSYNGAP1.org/SRFfam</a> Meeting ID - 972 0059 2178 Passcode - 848417</li></ul><p><br></p><p><strong>Comments: </strong><a href="mailto:[email protected]" target="_blank" rel="ugc noopener noreferrer">[email protected]</a></p><p><br></p><p><strong>Music: </strong><a href="https://pixabay.com/es/music/guitarra-solista-in-the-forest-ambient-acoustic-guitar-instrumental-background-music-for-videos-5718/" target="_blank" rel="ugc noopener noreferrer">In the Forest... by Lesfm from Pixabay</a></p><p><br></p><p>Episode 038 <em>SYNGAP1 </em>Stories, October 22, 2025</p><p><br></p><p>#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 <a href="https://pixabay.com/es/music/guitarra-solista-in-the-forest-ambient-acoustic-guitar-instrumental-background-music-for-videos-5718/" target="_blank" rel="ugc noopener noreferrer"></a>#CitizenHealth</p>