SYNGAP1 Stories
Syngap Research Fund, 501(c)(3)
Nicole Ciccone, Mom to Syngapian Jackson, shares heartfelt stories about Jackson's accidental diagnosis, advocating for our children, and treasuring small milestones in their lives.
JUL 1, 202538 MIN
Nicole Ciccone, Mom to Syngapian Jackson, shares heartfelt stories about Jackson's accidental diagnosis, advocating for our children, and treasuring small milestones in their lives.
JUL 1, 202538 MIN
Description
<p>This is another open and honest discussion of living with <em>SYNGAP1</em>-related disorders - the difficulties Jackson has faced, the tremendous achievements he has made, and helping each other in the <em>SYNGAP1</em> community.</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><a href="https://curesyngap1.org/syngap-warriors/jackson/" target="_blank" rel="ugc noopener noreferrer"><strong>Jackson's Warrior Story</strong></a></p><p><strong>Connect with Nicole:</strong></p><ul><li>Follow on <a href="https://www.facebook.com/nicole.ciccone.5" target="_blank" rel="ugc noopener noreferrer">Facebook</a></li><li>Nicole's <a href="https://www.facebook.com/nicole.ciccone.5/posts/pfbid0jc7K3vxkuZkLri6oGsCTtdQjz9qCw1D4JicHvvoupKRNCRnK5cPUmqwEGbeh7uJMl?rdid=Cq8Tkvw9NFnxnWvO" target="_blank" rel="ugc noopener noreferrer">"Dear Syngap" Post</a></li><li>Follow on <a href="https://www.instagram.com/p/CQoIs3QlxoU/?img_index=1" target="_blank" rel="ugc noopener noreferrer">Instagram</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"></a><a href="https://cureSYNGAP1.org/Citizen" target="_blank" rel="ugc noopener noreferrer">Citizen Health</a></li><li><a href="https://curesyngap1.org/calendar/fifth-annual-srf-gala-for-syngap1-2025/" target="_blank" rel="ugc noopener noreferrer">Fifth Annual SRF Gala for SYNGAP1 – 2025</a></li><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></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></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><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></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 035 <em>SYNGAP1 </em>Stories, July 1, 2025</p><p>#SYNGAP1StoriesJackson #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp35 #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</p>