SYNGAP1 Stories
Syngap Research Fund, 501(c)(3)SYNGAP1-related disorders are rare genetic disorders that affect Rainy Schlosser's daughter Hope and Jo Ashline's son Andrew. As of July 1, 2025, there are only 1,636 people in the world diagnosed with SYNGAP1. 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 pa... more
| Publishes | Monthly | Episodes | 39 | Founded | 3 years ago |
|---|---|---|---|---|---|
| Number of Listeners | Categories | Kids & FamilyParenting | |||
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This episode is packed with insightful advice and personal stories filled. "All he did was miss milestones. There was nothing medically wrong at the time. So we got genetic testing, and SYNGAP1 came back. For us, it was crushing, because there was no... more
New co-host Jo Ashline jumps right in with a touching, insightful conversation with Kari, full of uplifting and challenging experiences and advice, connecting the entire SYNGAP1 community.
If you liked this episode, please give our podcast 5 stars! ... more
If you liked this episode, please give our podcast 5 stars! All episodes are also available at cureSYNGAP1.org/Stories.
Kiera's Warrior Story
Lipman Family Movie
Fifth Annual SRF Gala for SYNGAP1 – 2025
* Donate and Ticket... more
This is another open and honest discussion of living with SYNGAP1-related disorders - the difficulties Jackson has faced, the tremendous achievements he has made, and helping each other in the SYNGAP1 community.
If you liked this episode, please giv... more
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Reviews
- The friend who asks you what you need to say
Listening to SYNGAP1 Stories is like talking to that one friend who asks you the questions you’ve been longing to answer. And who can listen to your honest answers. It can be hard to find the people who can listen to experiences they don’t have themselves. Listen to this beautiful podcast — it stands as a friend, and listening to it gives me comfort, hope, and reduces isolation.
Apple Podcasts5syngap science mom
United States3 months ago - Nicole and Jackson's story
Before listening, I had heard of SYNGAP1 briefly but never truly knew what it was or how it was diagnosed. It was an eye opener. Nicole's story about Jackson was heart warming and educational. Her love for her son is evident. Nicole - you are an amazing mom and advocate for your son!
Apple Podcasts5KLeo925United States4 months ago - Love it so much !!! Ty
I hold onto hope that someday, there will be a cure. A day when no child has to struggle, and every family can breathe easier.
I am so incredibly proud of Nicole—her strength, her voice, and her fierce dedication to her child and to the entire Sin Gap community. She is a warrior, a light, and a source of inspiration for all of us. Her love and determination are helping pave the way for a brighter future.
Keep fighting. Keep believing. One day, hope will become healing.
Apple Podcasts5My cousin keepersUnited States4 months ago - Supportive community that provides valuable insight
Thank you for having our dear friend Nicole on to speak about her beautiful son Jackson and their remarkable story. Nicole provides a wealth of knowledge through lived experience which benefits so many parents who have children with unique needs. Their family has absolutely touched our hearts and we have been forever changed learning about the experiences of families in the syngap1 community. I hope awareness will continue to be spread far and wide and relief will come to all these families in t... more
Apple Podcasts5CbcarboneUnited States4 months ago - Inspiring
I know it has to be very challenging for parents to open up about such vulnerable things that take place in their day-to-day lives and their children’s. I applaud these parents who share their stories in order to spread awareness for other families. Hopefully one day we can find a cure for every kid with rare genetic disorders 🤍
Apple Podcasts5MomToBe2025United States4 months ago
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SYNGAP1 Stories launched 3 years ago and published 39 episodes to date. You can find more information about this podcast including rankings, audience demographics and engagement in our podcast database.
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