SYNGAP1 Stories
Syngap Research Fund, 501(c)(3)
SRF Board member John Hill talks about grand-niece Kiera's progress, love for swimming, the upcoming Gala for SYNGAP1, and volunteering with SRF as an extended family member and a retiree.
AUG 4, 202528 MIN
SRF Board member John Hill talks about grand-niece Kiera's progress, love for swimming, the upcoming Gala for SYNGAP1, and volunteering with SRF as an extended family member and a retiree.
AUG 4, 202528 MIN
Description
<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/kiera/" target="_blank" rel="ugc noopener noreferrer"><strong>Kiera's Warrior Story</strong></a></p><p><a href="https://curesyngap1.org/resources/movies/kiera/" target="_blank" rel="ugc noopener noreferrer"><strong>Lipman Family Movie</strong></a></p><p><strong></strong><a href="https://curesyngap1.org/calendar/fifth-annual-srf-gala-for-syngap1-2025/" target="_blank" rel="ugc noopener noreferrer"><strong>Fifth Annual SRF Gala for SYNGAP1 – 2025</strong></a><strong></strong></p><ul><li><a href="https://donate.curesyngap1.org/event/gala-for-syngap1/e660256" target="_blank" rel="ugc noopener noreferrer">Donate and Tickets</a></li></ul><ul><li><a href="https://curesyngap1.org/syngap-warriors/caren/" target="_blank" rel="ugc noopener noreferrer">Caren - oldest known person with SRD</a></li></ul><ul><li><a href="https://curesyngap1.org/team/leadership-team/kathryn-helde-phd/" target="_blank" rel="ugc noopener noreferrer">Kathryn Helde - keynote speaker at Gala</a></li></ul><p><br></p><p><strong>Connect with John:</strong></p><ul><li><a href="https://curesyngap1.org/team/board-members/john-hill/" target="_blank" rel="ugc noopener noreferrer">SRF Bio</a></li><li>Follow on <a href="https://www.linkedin.com/in/john-hill-13418b14b/" target="_blank" rel="ugc noopener noreferrer">LinkedIn</a> (<a href="https://www.linkedin.com/in/john-hill-b5a9a79/" target="_blank" rel="ugc noopener noreferrer">2nd account</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://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></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>SRF Event 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/beacon-of-hope-syngap1-benefit/" target="_blank" rel="ugc noopener noreferrer">Beacon of Hope: A Benefit for SYNGAP1</a></li><li><a href="https://curesyngap1.org/calendar/scramble-for-syngap-2025/" target="_blank" rel="ugc noopener noreferrer">Fourth Annual Scramble for SynGAP – 2025</a></li><li><a href="https://curesyngap1.org/calendar/list/" target="_blank" rel="noopener noreferer">SRF Calendar</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://curesyngap1.org/events/conferences/cure-syngap1-conference-2025-hosted-by-srf/" target="_blank" rel="noopener noreferer">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/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></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><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"></a></li><li><a href="https://curesyngap1.org/resources/studies/the-emerald-study/" target="_blank" rel="ugc noopener noreferrer">The EMERALD Study</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 036 <em>SYNGAP1 </em>Stories, August 4, 2025</p><p>#SYNGAP1StoriesKiera #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp36 #Fundraising #GalaForSyngap1 #Volunteer #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #CureSyngap1Conf #SYNGAP1Siblings #Caregiver #SelfHelp #Conf25 #Therapy</p>