SYNGAP1 Stories
Hosted by Rainy · CURE SYNGAP1, 501(c)(3) fka SynGAP Research Fund
5.0from 42 ratings
- 42
- Episodes
- 42
- Ratings
- 2023
- First episode
- 277K
- YouTube views
About SYNGAP1 Stories
SYNGAP1-Related Disorders are rare genetic disorders that affect Rainy Schlosser's daughter Hope and Jo Ashline's son Andrew. As of January 1, 2026, only 1,707 people in the world were diagnosed. There is no cure. In each episode of SYNGAP1 Stories, first developed by Ashley Frye and continued by Rainy and Jo, we chat with SYNGAP1 parents, volunteers, caregivers, researchers, and partners about their journey with SYNGAP1 in their lives. Their joys and successes, as well as heartaches and advice, will be discussed in this heart-warming series as we support the SYNGAP1 community.
- Publisher
- CURE SYNGAP1, 501(c)(3) fka SynGAP Research Fund
- Category
- kids & family
- Language
- en
- Explicit
- No
- First episode
- 24 Jan 2023
- Latest episode
- 15 May 2026
Latest episodes
42 episodes in the feed.
15 May 2026
Mike Graglia, CURE SYNGAP1 Founder, CEO, & SYNGAP1 Dad to Tony shares a very personal family update.
Show Notes: "When your kids are tiny, we've all said it ... 'Nobody can take care of this kid but us!' And we believed that ... until about a year ago." Mike Graglia, Co-Founder and CEO of CURE SYNGAP1, and Dad to Syngapian Tony, joins Jo to talk about the latest chapter in raising Tony, diagnosed with SYNGAP1-Related Disorders in 2018. It's not always easy to talk about the difficult times in our rare lives, but that makes it even more important to do so. If you've had similar experiences, please email us at ed@cureSYNGAP1.org (mailto:ed@curesyngap1.org). If you liked this episode, please give our podcast 5 stars! Tony’s Warrior Story (https://curesyngap1.org/syngap-warriors/tony/) Connect with Mike: mike@cureSYNGAP1.org (mailto:mike@cureSYNGAP1.org) Mike Graglia’s Bio (https://curesyngap1.org/team/board-members/mike-graglia/) Ashley Evans's Bio (https://curesyngap1.org/team/leadership-team/ashley-evans-mphil-mba-co-founder/) Mike & Ashley’s Story (https://youtu.be/lLO2hsAi4-M) Support Mike and Ashley by donating to the upcoming Night of Impact Gala in San Francisco - cureSYNGAP1.org/SF26 (https://curesyngap1.org/calendar/cure-syngap1-night-of-impact-2026/) Related SYNGAP1 Stories Episodes: SYNGAP1 Stories Episode 002 (https://curesyngap1.org/podcasts/syngap1-stories/syngap1-stories-episode-002-mike-graglia/) - Mike Graglia SYNGAP1 Stories Episode 011 (https://curesyngap1.org/podcasts/syngap1-stories/syngap1-stories-episode-011-ashley-evans/) - Ashley Evans SYNGAP1 Stories Episode 016 (https://curesyngap1.org/podcasts/syngap1-stories/syngap1-stories-episode-016-mike-graglia/) - Mike Graglia CURE SYNGAP1 2026 Conference (https://curesyngap1.org/calendar/cure-syngap1-conference-2026-denver/) in Denver - pre-register (https://docs.google.com/forms/d/e/1FAIpQLSfCeqwwlYSOOnno3wSV7uMCBwRlLAYdV7PvZjjT2vS9CNTncw/viewform) to receive updates Connect with Jo: Andrew's Warrior (https://curesyngap1.org/syngap-warriors/andrew/) jo@cureSYNGAP1.org (mailto:jo@cureSYNGAP1.org) Jo's CURE SYNGAP1 bio (https://curesyngap1.org/team/volunteers/jo-ashline/) Instagram (https://www.instagram.com/joashline?igsh=NTc4MTIwNjQ2YQ%3D%3D&utm_source=qr) Jo's personal blog page (http://joashline.com/) CURE SYNGAP1 & SYNGAP1-Related Disorders Info: (https://www.syngapresearchfund.org/cannonball) (https://www.syngapresearchfund.org/cannonball) CURE SYNGAP1 (https://cureSYNGAP1.org/) fka SynGAP Research Fund (SRF) What are SYNGAP1-Related Disorders? (https://curesyngap1.org/what-is-syngap1/) (https://www.syngapresearchfund.org/home/what-is-syngap1) How Many People Have SYNGAP1? (https://curesyngap1.org/how-many-people-have-syngap1-census/) SYNGAP1 Resources for Newly Diagnosed Families (https://curesyngap1.org/syngap1-resources-for-newly-diagnosed-families/) Donate to CURE SYNGAP1 (https://curesyngap1.org/donate/) CURE SYNGAP1 Brochure (https://drive.google.com/file/d/199bEoDS0nsQ_U0yg6nfFBzoHMq0fN3HM/view?usp=sharing) (https://curesyngap1.org/get-involved/)CURE SYNGAP1 Fundraising Resource Page (https://curesyngap1.org/srf-fundraising-resources/) Wednesday Warriors (https://curesyngap1.org/syngap-warriors/) Supporting SYNGAP1 Siblings (https://curesyngap1.org/sibling-support/) SYNGAP1 & Epilepsy (https://curesyngap1.org/syngap1-epilepsy/) Addressing the Symptoms of SYNGAP1 (https://curesyngap1.org/syngap1-treatment/) Why Getting a Genetic Diagnosis Matters (https://curesyngap1.org/blog/why-getting-a-genetic-diagnosis-matters-especially-for-syngap1/) (https://curesyngap1.org/press-releases/)CURE SYNGAP1's Medical Considerations Document (https://drive.google.com/file/d/1bVHV0O1Lv6H8pXGMR6nbYUKWROIQO_yv/view#googtrans(en|en)) SYNGAP1 Studies and Trials: (https://www.syngapresearchfund.org/cannonball) SYNGAP1 Studies (https://cureSYNGAP1.org/Studies) SYNGAP1 ProMMiS (https://curesyngap1.org/resources/studies/syngap1-prommis/) – Prospective Multidisciplinary, Multisite Study for Clinical Excellence: CHOP, CHCO, Stanford SYNGAP1 Clinical Trials (https://cureSYNGAP1.org/CT) Other Episode Links: Lakemary Center https://lakemary.org/ (https://lakemary.org/) Connect with CURE SYNGAP1 (https://curesyngap1.org/curesyngap1connect/) (@cureSYNGAP1): (https://www.facebook.com/cureSYNGAP1)LinkedIn (https://www.linkedin.com/company/curesyngap1/) Facebook (https://www.facebook.com/cureSYNGAP1) Instagram (https://www.instagram.com/curesyngap1/) (https://www.linkedin.com/company/curesyngap1/)YouTube (https://www.youtube.com/@CureSYNGAP1) (https://curesyngap1.org/podcasts/syngap10/)X/Twitter (https://twitter.com/cureSYNGAP1) TikTok (https://www.tiktok.com/@curesyngap1) CURE SYNGAP1 Podcast (https://curesyngap1.org/podcasts/syngap10/)w/ Mike CURE SYNGAP1 Apple Podcast Channel (https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917) Syngap Global Network (https://syngapglobal.net/) Comments: ed@cureSYNGAP1.org (mailto:ed@curesyngap1.org) Music: In the Forest... by Lesfm from Pixabay (https://pixabay.com/es/music/guitarra-solista-in-the-forest-ambient-acoustic-guitar-instrumental-background-music-for-videos-5718/) Episode 041 - SYNGAP1 Stories, May 15, 2026 #SYNGAP1StoriesTony #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp41 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #CureSYNGAP1Conf #SYNGAP1Siblings #Caregiver #Behavior #Communication #Volunteer #CureSYNGAP1Conf26 #Therapy (https://pixabay.com/es/music/guitarra-solista-in-the-forest-ambient-acoustic-guitar-instrumental-background-music-for-videos-5718/)#CitizenHealth #SyngapGlobalNetwork
16 Mar 2026
Beata Tarasiuk - Part 2: CURE SYNGAP1 Volunteer talks about the SYNGAP1 Polska community, advancements toward a cure, inclusion, her Polish-language podcast, and her dream for us all.
Part 2 of host Jo Ashline's amazing chat with Beata Tarasiuk continues. Today, Beata shares her dream for all families living with SYNGAP1-Related Disorders as they dive deep into starting the Polish community, the importance of international collaboration and inclusion, volunteering for CURE SYNGAP1, and advocating for adult Syngapians. "There is hope for improvement! If the epilepsy stops, if they learn how to communicate better, if they entertain themselves, if they have more independent lives, then that's meaningful!" Don't forget to watch Part 1 of this interview - Episode 39 and all other episodes are available at cureSYNGAP1.org/Stories (https://cureSYNGAP1.org/Stories). If you liked this episode, please give our podcast 5 stars! (https://curesyngap1.org/syngap-warriors/ty/)Kasia's Warrior Story (https://curesyngap1.org/syngap-warriors/kasia/) Connect with Beata: beata@cureSYNGAP1.org (mailto:beata@cureSYNGAP1.org) Beata's CURE SYNGAP1 bio (https://curesyngap1.org/team/international-ambassadors/beata-tarasiuk/) LinkedIn (https://www.linkedin.com/in/beata-tarasiuk-3462b0b6/) Beata's Podcast (https://youtube.com/@beata-.-?si=8eoneqNCPA98yq8p) Other Episode Links: (https://curesyngap1.org/get-involved/)CURE SYNGAP1 State Ambassadors (https://curesyngap1.org/team/state-ambassadors/) Get Involved with CURE SYNGAP1 (https://curesyngap1.org/get-involved/) Volunteer with CURE SYNGAP1 (https://cureSYNGAP1.org/Vol) The Benefits of Citizen: One Mom’s Story (https://curesyngap1.org/blog/the-benefits-of-ciitizen-one-moms-story/) First SYNGAP1 Family From Poland Goes To CHOP! (https://curesyngap1.org/blog/first-syngap1-family-from-poland-goes-to-chop/) CURE SYNGAP1 Poland: Website (https://syngap1.com.pl/) Facebook (https://www.facebook.com/share/1EASzktVSG/?mibextid=wwXIfr) Instagram (https://www.instagram.com/syngap1_polska?igsh=MW94dW13ZHltN2l1bA==) Connect with Jo: Andrew's Warrior (https://curesyngap1.org/syngap-warriors/andrew/) jo@cureSYNGAP1.org (mailto:jo@cureSYNGAP1.org) Jo's CURE SYNGAP1 bio (https://curesyngap1.org/team/volunteers/jo-ashline/) Instagram (https://www.instagram.com/joashline?igsh=NTc4MTIwNjQ2YQ%3D%3D&utm_source=qr) Jo's personal blog page (http://joashline.com/) CURE SYNGAP1 & SYNGAP1-Related Disorders Info: (https://www.syngapresearchfund.org/cannonball) (https://www.syngapresearchfund.org/cannonball) CURE SYNGAP1 (https://cureSYNGAP1.org/) fka SynGAP Research Fund (SRF) What are SYNGAP1-Related Disorders? (https://curesyngap1.org/what-is-syngap1/) (https://www.syngapresearchfund.org/home/what-is-syngap1) How Many People Have SYNGAP1? (https://curesyngap1.org/how-many-people-have-syngap1-census/) SYNGAP1 Resources for Newly Diagnosed Families (https://curesyngap1.org/syngap1-resources-for-newly-diagnosed-families/) Donate to CURE SYNGAP1 (https://curesyngap1.org/donate/) CURE SYNGAP1 Brochure (https://drive.google.com/file/d/12VuyfjgM-KfwyVtN2D30vkAn0W7070_G/view?usp=sharing) (https://curesyngap1.org/get-involved/)CURE SYNGAP1 Fundraising Resource Page (https://curesyngap1.org/srf-fundraising-resources/) Wednesday Warriors (https://curesyngap1.org/syngap-warriors/) Supporting SYNGAP1 Siblings (https://curesyngap1.org/sibling-support/) SYNGAP1 & Epilepsy (https://curesyngap1.org/syngap1-epilepsy/) Addressing the Symptoms of SYNGAP1 (https://curesyngap1.org/syngap1-treatment/) Why Getting a Genetic Diagnosis Matters (https://curesyngap1.org/blog/why-getting-a-genetic-diagnosis-matters-especially-for-syngap1/) (https://curesyngap1.org/press-releases/)CURE SYNGAP1's Medical Considerations Document (https://drive.google.com/file/d/1bVHV0O1Lv6H8pXGMR6nbYUKWROIQO_yv/view#googtrans(en|en)) SYNGAP1 Studies and Trials: (https://www.syngapresearchfund.org/cannonball) SYNGAP1 Studies (https://cureSYNGAP1.org/Studies) SYNGAP1 ProMMiS (https://curesyngap1.org/resources/studies/syngap1-prommis/) – Prospective Multidisciplinary, Multisite Study for Clinical Excellence: CHOP, CHCO, Stanford SYNGAP1 Clinical Trials (https://cureSYNGAP1.org/CT) Connect with CURE SYNGAP1 (https://curesyngap1.org/curesyngap1connect/) (@cureSYNGAP1): (https://www.facebook.com/cureSYNGAP1)LinkedIn (https://www.linkedin.com/company/curesyngap1/) Facebook (https://www.facebook.com/cureSYNGAP1) Instagram (https://www.instagram.com/curesyngap1/) (https://www.linkedin.com/company/curesyngap1/)YouTube (https://www.youtube.com/@CureSYNGAP1) (https://curesyngap1.org/podcasts/syngap10/)X/Twitter (https://twitter.com/cureSYNGAP1) TikTok (https://www.tiktok.com/@curesyngap1) CURE SYNGAP1 Podcast (https://curesyngap1.org/podcasts/syngap10/)w/ Mike CURE SYNGAP1 Apple Podcast Channel (https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917) Syngap Global Network (https://syngapglobal.net/) Comments: ed@cureSYNGAP1.org (mailto:ed@curesyngap1.org) Music: In the Forest... by Lesfm from Pixabay (https://pixabay.com/es/music/guitarra-solista-in-the-forest-ambient-acoustic-guitar-instrumental-background-music-for-videos-5718/) Episode 040 - Part 2 SYNGAP1 Stories, March 16, 2026 #SYNGAP1StoriesKasia #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp40 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #CureSYNGAP1Conf #SYNGAP1Siblings #Caregiver #Behavior #Communication #Volunteer #CureSYNGAP1Conf26 #Therapy #SYNGAP1Poland #SyngapPolska (https://pixabay.com/es/music/guitarra-solista-in-the-forest-ambient-acoustic-guitar-instrumental-background-music-for-videos-5718/)#CitizenHealth #SyngapGlobalNetwork
27 Feb 2026
Beata Tarasiuk - Part 1 of 2: CURE SYNGAP1 Volunteer and Ambassador to the Polish community, joins Jo to talk about Kasia, inclusion, genetic testing, and "coming out" after post-diagnostic grief.
In Part One of this interview, Beata and Jo discuss finding a school for Kasia and the tremendous choices and sacrifices parent caregivers must make in the face of a devastating diagnosis. Overcoming her own personal grief to go public about Kasia's journey, Beata began sharing her story, and advocating internationally to help raise awareness of SYNGAP1-Related Disorders and the need for finding a cure. Part 2 will be out in a couple of weeks! If you liked this episode, please give our podcast 5 stars! All episodes are also available at cureSYNGAP1.org/Stories (https://cureSYNGAP1.org/Stories). (https://curesyngap1.org/syngap-warriors/ty/)Kasia's Warrior Story (https://curesyngap1.org/syngap-warriors/kasia/) Connect with Beata: beata@cureSYNGAP1.org (mailto:beata@cureSYNGAP1.org) Beata's CURE SYNGAP1 bio (https://curesyngap1.org/team/international-ambassadors/beata-tarasiuk/) LinkedIn (https://www.linkedin.com/in/beata-tarasiuk-3462b0b6/) Beata's Podcast (https://youtube.com/@beata-.-?si=8eoneqNCPA98yq8p) Other Episode Links: (https://curesyngap1.org/get-involved/)CURE SYNGAP1 State Ambassadors (https://curesyngap1.org/team/state-ambassadors/) Get Involved with CURE SYNGAP1 (https://curesyngap1.org/get-involved/) Volunteer with CURE SYNGAP1 (https://cureSYNGAP1.org/Vol) The Benefits of Citizen: One Mom’s Story (https://curesyngap1.org/blog/the-benefits-of-ciitizen-one-moms-story/) First SYNGAP1 Family From Poland Goes To CHOP! (https://curesyngap1.org/blog/first-syngap1-family-from-poland-goes-to-chop/) CURE SYNGAP1 Poland: Website (https://syngap1.com.pl/) Facebook (https://www.facebook.com/share/1EASzktVSG/?mibextid=wwXIfr) Instagram (https://www.instagram.com/syngap1_polska?igsh=MW94dW13ZHltN2l1bA==) Connect with Jo: Andrew's Warrior (https://curesyngap1.org/syngap-warriors/andrew/) jo@cureSYNGAP1.org (mailto:jo@cureSYNGAP1.org) Jo's CURE SYNGAP1 bio (https://curesyngap1.org/team/volunteers/jo-ashline/) Instagram (https://www.instagram.com/joashline?igsh=NTc4MTIwNjQ2YQ%3D%3D&utm_source=qr) Jo's personal blog page (http://joashline.com/) CURE SYNGAP1 & SYNGAP1-Related Disorders Info: (https://www.syngapresearchfund.org/cannonball) (https://www.syngapresearchfund.org/cannonball) (https://curesyngap1.org/what-is-syngap1/)CURE SYNGAP1 fka SynGAP Research Fund - https://cureSYNGAP1.org/ (https://curesyngap1.org/) What are SYNGAP1-Related Disorders? (https://curesyngap1.org/what-is-syngap1/) (https://www.syngapresearchfund.org/home/what-is-syngap1) How Many People Have SYNGAP1? (https://curesyngap1.org/how-many-people-have-syngap1-census/) SYNGAP1 Resources for Newly Diagnosed Families (https://curesyngap1.org/syngap1-resources-for-newly-diagnosed-families/) Donate to CURE SYNGAP1 (https://curesyngap1.org/donate/) CURE SYNGAP1 Brochure (https://drive.google.com/file/d/12VuyfjgM-KfwyVtN2D30vkAn0W7070_G/view?usp=sharing) (https://curesyngap1.org/get-involved/)CURE SYNGAP1 Fundraising Resource Page (https://curesyngap1.org/srf-fundraising-resources/) Wednesday Warriors (https://curesyngap1.org/syngap-warriors/) Supporting SYNGAP1 Siblings (https://curesyngap1.org/sibling-support/) SYNGAP1 & Epilepsy (https://curesyngap1.org/syngap1-epilepsy/) Addressing the Symptoms of SYNGAP1 (https://curesyngap1.org/syngap1-treatment/) Why Getting a Genetic Diagnosis Matters (https://curesyngap1.org/blog/why-getting-a-genetic-diagnosis-matters-especially-for-syngap1/) (https://curesyngap1.org/press-releases/)CURE SYNGAP1's Medical Considerations Document (https://drive.google.com/file/d/1bVHV0O1Lv6H8pXGMR6nbYUKWROIQO_yv/view#googtrans(en|en)) SYNGAP1 Studies and Trials: (https://www.syngapresearchfund.org/cannonball) SYNGAP1 Studies (https://cureSYNGAP1.org/Studies) SYNGAP1 ProMMiS (https://curesyngap1.org/resources/studies/syngap1-prommis/) – Prospective Multidisciplinary, Multisite Study for Clinical Excellence: CHOP, CHCO, Stanford SYNGAP1 Clinical Trials (https://cureSYNGAP1.org/CT) Connect with CURE SYNGAP1 (@cureSYNGAP1): (https://www.facebook.com/cureSYNGAP1)LinkedIn (https://www.linkedin.com/company/curesyngap1/) Facebook (https://www.facebook.com/cureSYNGAP1) Instagram (https://www.instagram.com/curesyngap1/) (https://www.linkedin.com/company/curesyngap1/)YouTube (https://www.youtube.com/@CureSYNGAP1) (https://curesyngap1.org/podcasts/syngap10/)X/Twitter (https://twitter.com/cureSYNGAP1) TikTok (https://www.tiktok.com/@curesyngap1) CURE SYNGAP1 Podcast (https://curesyngap1.org/podcasts/syngap10/)w/ Mike CURE SYNGAP1 Apple Podcast Channel (https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917) Syngap Global Network (https://syngapglobal.net/) Comments: ed@cureSYNGAP1.org (mailto:ed@curesyngap1.org) Music: In the Forest... by Lesfm from Pixabay (https://pixabay.com/es/music/guitarra-solista-in-the-forest-ambient-acoustic-guitar-instrumental-background-music-for-videos-5718/) Episode 039 - Part 1 SYNGAP1 Stories, February 27, 2026 #SYNGAP1StoriesKasia #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp39 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #CureSYNGAP1Conf #SYNGAP1Siblings #Caregiver #Behavior #Communication #Volunteer #CureSYNGAP1Conf26 #Therapy #SYNGAP1Poland #SyngapPolska (https://pixabay.com/es/music/guitarra-solista-in-the-forest-ambient-acoustic-guitar-instrumental-background-music-for-videos-5718/)#CitizenHealth #SyngapGlobalNetwork
Reach and audience
Public platform figures. Ratings count people who left a rating, not total listeners.
- YouTube views
- 276,970
- Score snapshot 15 Sept 2025
- Apple Podcasts (US)
- 5.0 / 5
- 31 ratings
- Spotify
- 5.0 / 5
- 11 ratings
Podcast Authority Score: 74 / 100
A composite of feed quality, social presence, YouTube performance and engagement. Read the methodology.
- Quality
- 74
- Social presence
- 97
- YouTube
- 86
- Engagement
- 51
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