SYNGAP1 Stories
Syngap Research Fund, 501(c)(3)
Kathryn Helde, SRF's CSO and SYNGAP1 Mom talks about her adult son Joey, genetic testing, hippotherapy, and Joey's words!
MAR 18, 202547 MIN
Kathryn Helde, SRF's CSO and SYNGAP1 Mom talks about her adult son Joey, genetic testing, hippotherapy, and Joey's words!
MAR 18, 202547 MIN
Description
<p>Show Notes</p><p>SRF’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."</p><p><br /></p><p>All episodes are 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 Kathryn:</strong></p><ul><li><a href="[email protected]" target="_blank" rel="ugc noopener noreferrer">[email protected]</a></li><li><a href="https://curesyngap1.org/team/leadership-team/kathryn-helde-phd/" target="_blank" rel="ugc noopener noreferrer">Kathryn's SRF bio</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></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">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>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/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://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/srf-legislative-advocacy-efforts-for-syngap1/" target="_blank" rel="ugc noopener noreferrer">Advocate for <em>SYNGAP1</em></a></li></ul><ul><li><a href="https://curesyngap1.org/syngap-warriors/" target="_blank" rel="ugc noopener noreferrer">Wednesday Warriors</a></li><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</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/team/researchers/heather-mefford-md-phd/" target="_blank" rel="ugc noopener noreferrer">Heather Mefford, MD, PhD</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/blog/the-arc-financial-planning-video-series/" target="_blank" rel="ugc noopener noreferrer">Special Needs Trusts</a></li><li><a href="https://cureSYNGAP1.org/Sprint" target="_blank" rel="ugc noopener noreferrer">Sprint4Syngap 2025</a> (<a href="https://www.classy.org/campaign/sprint4syngap2025/c660255" target="_blank" rel="ugc noopener noreferrer">donation page</a> and <a href="https://drive.google.com/file/d/10Q5cG3umf6_owuolXlwb_vnnFWPfKAJJ/view" target="_blank" rel="ugc noopener noreferrer">resource guide</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">SRF Press Releases</a></li><li><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 (@cure</strong><em><strong>SYNGAP1</strong></em><strong>):</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">cure<em>SYNGAP1</em>.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 032 <em>SYNGAP1 </em>Stories, March 18, 2025</p><p>#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</p>