Jo Ashline, writer & SRF Volunteer, shares some advice as the Mom of an adult Syngapian, 23-yo Andrew.

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SYNGAP1 Stories

Syngap Research Fund, 501(c)(3)

39 episodes

3 days ago

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 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.

Parenting

Kids & Family

RSS

All content for SYNGAP1 Stories is the property of Syngap Research Fund, 501(c)(3) and is served directly from their servers with no modification, redirects, or rehosting. The podcast is not affiliated with or endorsed by Podjoint in any way.

Parenting

Kids & Family

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Jo Ashline, writer & SRF Volunteer, shares some advice as the Mom of an adult Syngapian, 23-yo Andrew.

SYNGAP1 Stories

1 hour 2 minutes 40 seconds

5 months ago

Jo Ashline, writer & SRF Volunteer, shares some advice as the Mom of an adult Syngapian, 23-yo Andrew.

This episode gets very personal about the language of behaviors, a long road to a SYNGAP1 diagnosis, the strength of the SRF community, as well as the personal crisis of Andrew's emotional and physical abuse to which he was subjected when he was ten.

If you liked this episode, please give our podcast 5 stars! All episodes are also available at ⁠⁠⁠cureSYNGAP1.org/Stories⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠.

Connect with Jo:

Jo's SRF Blogs:

Connect with ⁠⁠⁠⁠⁠⁠Rainy:

⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠rainy@cureSYNGAP1.org⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Rainy's SRF Bio⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
Instagram - ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠@Hope4theCure⁠⁠⁠⁠⁠⁠
YouTube - ⁠⁠⁠⁠⁠⁠⁠@Hope4theCure⁠⁠⁠⁠⁠⁠⁠
Facebook - ⁠⁠⁠⁠⁠⁠⁠Hope SelahMay⁠⁠⁠⁠⁠⁠
SYNGAP1 Stories ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Episode 028⁠⁠⁠⁠⁠⁠
⁠Rainy and Hope's Cross Country Quest⁠

Episode Links:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

SRF & SYNGAP1 Info:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

SYNGAP1 Studies and Trials:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

⁠⁠⁠SYNGAP1 Studies⁠⁠⁠⁠⁠
⁠⁠⁠⁠SYNGAP1 ProMMiS⁠⁠⁠⁠ – Prospective Multidisciplinary, Multisite Study for Clinical Excellence: CHOP, CHCO, Stanford
⁠⁠⁠⁠⁠Clinical Trials⁠⁠⁠⁠⁠
⁠⁠⁠⁠⁠Frazier Eye Study⁠⁠⁠⁠⁠
⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Citizen Health⁠⁠⁠⁠⁠

More Links:

Connect with SRF (@cureSYNGAP1):

Family Zoom Meeting (bi-weekly on Wednesdays, 8PM ET):

⁠⁠⁠cureSYNGAP1.org/SRFfam⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Meeting ID - 972 0059 2178 Passcode - 848417

Comments: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ed@cureSYNGAP1.org⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

Music: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠In the Forest... by Lesfm from Pixabay ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

Episode 034 SYNGAP1 Stories, June 5, 2025

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