この心温まるシリーズは、希少遺伝性疾患に影響を受けた家族の個人的な物語を共有し、彼らの課題、勝利、そしてコミュニティのレジリエンスを強調します。
Nicole Ciccone, Mom to Syngapian Jackson, shares heartfelt stories about Jackson's accidental diagnosis, advocating for our children, and treasuring small milestones in their lives.
E35 • 38 mins • Jul 1, 2025
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最近のエピソード
Jul 1, 2025
Nicole Ciccone, Mom to Syngapian Jackson, shares heartfelt stories about Jackson's accidental diagnosis, advocating for our children, and treasuring small milestones in their lives.
E35 • 38 mins
Jun 5, 2025
Jo Ashline, writer & SRF Volunteer, shares some advice as the Mom of an adult Syngapian, 23-yo Andrew.
E34 • 63 mins
Apr 8, 2025
Eric Moulton, SRF Board Member and SYNGAP1 Dad, talks about Phoebe, schools, receiving her diagnosis, raising $60,000+ for Sprint4Syngap, and more!
E33 • 41 mins
Mar 18, 2025
Kathryn Helde, SRF's CSO and SYNGAP1 Mom talks about her adult son Joey, genetic testing, hippotherapy, and Joey's words!
E32 • 48 mins
Feb 18, 2025
Chelsey and Anthony Navarro, SRF's Science Writer and Resource Mobilization Director (resp.), talk about daughter Emmy, grieving, preparing for the future, and expanding your community.
E31 • 54 mins
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