検索キーワード： 著者 "Syngap Research Fund 501(c)(3)" すべてのカテゴリー

Bienvenidos al nuevo podcast de SRF en Español: Café Syngap1 pretender ser un espacio para encontrar apoyo, consejos y esperanza en una comunidad de Padres, Hermanos, Investigadores, Científicos, Terapeutas y todos aquellos involucrados en esta patología. La esperanza de nuestra presentadora Merlina Davila es que a partir de compartir nuestras historias, conocimientos, experiencias, retos, éxitos y avances, seamos mas unidos como comunidad y que cada episodio nos inspire a seguir adelante.

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.

Over 1,600 families are caring for a loved one with the rare disease ”SynGAP” resulting from a variant of the SYNGAP1 gene. This weekly podcast is for them. -A quick summary of the latest news in the space. The host is Mike Graglia, co-founder & managing director of CURE SYNGAP1. CURE SYNGAP1 is a parent-led public charity in the US that strives to accelerate research into treatments for SYNGAP1 so that we can help our loved ones in a timeframe that matters. Learn more at https://cureSYNGAP1.org