SYNGAP1 Stories

SYNGAP1-Related Disorders is a rare disease that affects Ashley Frye's son Nathan and Rainy Schlosser's daughter Hope. As of October 1, 2024, there are fewer than 1,500 people in the world diagnosed with SYNGAP1. There is no cure. In each episode of SYNGAP1 Stories, Ashley will chat with SynGap 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 SynGap community.

Épisodes récents

Nov 19, 2024

Stacey Miller, 2024 SYNGAP1 Conference Director, chats with new co-host Rainy Schlosser about the conference and Stacey's son, Jack.

E29 • 36 mins

Apr 11, 2024

Rainy Schlosser, SYNGAP1 Mom to Hope, discusses her 4-year-old daughter's journey in life and across the US for 3 studies!

E28 • 43 mins

Mar 3, 2024

Jackie Kancir, SYNGAP1 Mom and Advocacy Leader for SRF talks about daughter Jadyne and shares advice for all rare disease parents.

E27 • 43 mins

Feb 13, 2024

Paulina Polanco, SRF volunteer and sibling to twin sisters with SYNGAP1 shares her very personal story of loss of what could have been, love, and hope.

E26 • 52 mins

Jan 30, 2024

Jessica Johnson, SRF Volunteer and SYNGAP1 Mom shares her positive outlook on raising her son Kai.

E25 • 46 mins