SYNGAP1 Stories
Syngap Research Fund, 501(c)(3)
Kari Imperatore, SYNGAP1 Mom, CFC Coordinator, and Navy Vet, talks about Trajan's genetic testing, the importance of trying, and the best and worst of SYNGAP1 while watching for whales!
SEP 3, 202560 MIN
Kari Imperatore, SYNGAP1 Mom, CFC Coordinator, and Navy Vet, talks about Trajan's genetic testing, the importance of trying, and the best and worst of SYNGAP1 while watching for whales!
SEP 3, 202560 MIN
Description
<p>New co-host Jo Ashline jumps right in with a touching, insightful conversation with Kari, full of uplifting and challenging experiences and advice, connecting the entire SYNGAP1 community.</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/trajan/" target="_blank" rel="noopener noreferer"><strong>Trajan's Warrior Story</strong></a></p><p><strong>Connect with Kari:</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/volunteers/a-kari-imperatore/" target="_blank" rel="ugc noopener noreferrer">Kari's SRF bio</a><strong></strong></li></ul><p><br></p><p><strong>Connect with Jo:</strong></p><ul><li><a href="https://curesyngap1.org/syngap-warriors/andrew/" target="_blank" rel="ugc noopener noreferrer">Andrew's Warrior Story</a></li><li><a href="mailto:[email protected]" target="_blank" rel="ugc noopener noreferrer">[email protected]</a></li><li><a href="https://curesyngap1.org/team/volunteers/jo-ashline/" target="_blank" rel="ugc noopener noreferrer">Jo's SRF bio</a></li><li>Follow Jo on <a href="https://www.instagram.com/joashline?igsh=NTc4MTIwNjQ2YQ%3D%3D&utm_source=qr" target="_blank" rel="ugc noopener noreferrer">Instagram</a></li><li><a href="http://joashline.com/" target="_blank" rel="ugc noopener noreferrer">Jo's personal blog page</a></li></ul><p><br></p><p><strong>Episode Links</strong>:<a href="https://www.syngapresearchfund.org/cannonball" target="_blank" rel="ugc noopener noreferrer"></a></p><ul><li><a href="https://curesyngap1.org/calendar/combined-federal-campaign-2025/" target="_blank" rel="ugc noopener noreferrer">Combined Federal Campaign (CFC)</a></li><li><a href="https://youtu.be/VOFsCNFMKII" target="_blank" rel="ugc noopener noreferrer">Kari's speech at the 2025 SYNGAP1 Gala</a></li><li><a href="https://curesyngap1.org/endd/" target="_blank" rel="ugc noopener noreferrer">Information about CHOP NHS</a></li><li><a href="https://curesyngap1.org/resources/studies/syngap1-clinic-at-childrens-hospital-colorado/" target="_blank" rel="ugc noopener noreferrer">Information about Colorado NHS (CHCO)</a></li><li><a href="https://curesyngap1.org/calendar/cure-syngap1-conference-2025-hosted-by-srf/" target="_blank" rel="ugc noopener noreferrer">Register for the 2025 Cure SYNGAP1 Conference in Atlanta</a></li></ul><p><br></p><p><strong>SRF & </strong><em><strong>SYNGAP1 </strong></em><strong>Info</strong>:<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>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 SRF</a></li><li><a href="https://drive.google.com/file/d/1_itsKq1AICFR5WONIpsWyk6byuD86DSZ/view?usp=sharing" target="_blank" rel="ugc noopener noreferrer">SRF <em>SYNGAP1</em> Brochure</a></li><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://curesyngap1.org/srf-fundraising-resources/" target="_blank" rel="ugc noopener noreferrer">SRF Fundraising Resource Page</a></li><li><a href="https://curesyngap1.org/team/state-ambassadors/" target="_blank" rel="ugc noopener noreferrer">SRF'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></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>More Links:</strong></p><ul><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/blog/the-arc-financial-planning-video-series/" target="_blank" rel="ugc noopener noreferrer">Special Needs Trusts</a></li><li><a href="https://cureSYNGAP1.org/Studies" target="_blank" rel="ugc noopener noreferrer"></a><a href="https://curesyngap1.org/resources/grants/" target="_blank" rel="ugc noopener noreferrer">SRF Grants</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">SRF's Medical Considerations Document</a></li></ul><p><br></p><p><strong>Connect with SRF (@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>SynGAP Research Fund <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><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>Episode 037 <em>SYNGAP1 </em>Stories, September 3, 2025</p><p>#SYNGAP1StoriesTrajan #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp37 #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 #CFC #NavyVeteran #Veteran #WhaleWatching</p>