SYNGAP1 Stories
Syngap Research Fund, 501(c)(3)
Jo Ashline, writer & SRF Volunteer, shares some advice as the Mom of an adult Syngapian, 23-yo Andrew.
JUN 5, 202562 MIN
Jo Ashline, writer & SRF Volunteer, shares some advice as the Mom of an adult Syngapian, 23-yo Andrew.
JUN 5, 202562 MIN
Description
<p>This episode gets very personal about the language of behaviors, a long road to a SYNGAP1 diagnosis, the strength of the SRF community, as well as the personal crisis of Andrew's emotional and physical abuse to which he was subjected when he was ten.</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><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>Jo's SRF Blogs:</strong></p><ul><li><a href="https://curesyngap1.org/blog/we-were-searching-for-syngap-we-just-didnt-know-it/" target="_blank" rel="ugc noopener noreferrer">We Were Searching for Syngap; We Just Didn’t Know It</a></li><li><a href="https://curesyngap1.org/blog/meet-the-globalvillage-of-syngapleaders/" target="_blank" rel="ugc noopener noreferrer">Meet the Global Village of Syngap Leaders</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 SRF 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>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/syngap-awareness-day-2025-splash-for-syngap/" target="_blank" rel="ugc noopener noreferrer">Splash For Syngap</a></li><li><a href="https://curesyngap1.org/blog/" target="_blank" rel="ugc noopener noreferrer">SRF Blog Collection</a></li><li><a href="https://curesyngap1.org/srf-legislative-advocacy-efforts-for-syngap1/" target="_blank" rel="ugc noopener noreferrer">SRF Advocacy Page</a></li><li><a href="https://www.dds.ca.gov/initiatives/sdp/" target="_blank" rel="ugc noopener noreferrer">California's Self Determination Program</a></li><li><a href="https://thelabnomads.com/" target="_blank" rel="ugc noopener noreferrer"></a><a href="https://thelabnomads.com/category/special-needs/" target="_blank" rel="ugc noopener noreferrer">Traveling with Special Needs Blogs</a></li><li><a href="https://edsource.org/2015/little-oversight-of-restraint-practices-in-special-education/78040?amp=1">EdSource article</a></li><li><a href="https://www.cbsnews.com/losangeles/news/family-of-boy-with-autism-alleges-he-was-abused-at-school-in-orange/">CBS News article</a></li><li><a href="https://www.nbclosangeles.com/news/parents-of-autistic-child/57890/">NBC News article</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 is <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://docs.google.com/forms/d/e/1FAIpQLSdXinCAb5B1ev33wxHjaEN_zinMVF-J841PXFJ57DKKS7DASA/viewform" target="_blank" rel="ugc noopener noreferrer">Pre-register for the 2025 Cure <em>SYNGAP1</em> Conference in Atlanta</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/blog/why-getting-a-genetic-diagnosis-matters-especially-for-syngap1/" target="_blank" rel="ugc noopener noreferrer"></a><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">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/ENDD" target="_blank" rel="ugc noopener noreferrer"></a><a href="https://cureSYNGAP1.org/Citizen" target="_blank" rel="ugc noopener noreferrer">Citizen Health</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">Facebook</a></li><li><a href="https://twitter.com/cureSYNGAP1" target="_blank" rel="ugc noopener noreferrer">Twitter</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">LinkedIn</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">YouTube</a></li><li><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 034 <em>SYNGAP1 </em>Stories, June 5, 2025</p><p>#SYNGAP1StoriesAndrew #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp34 #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 #SplashForSyngap</p>