CdLS Connections
Navigating the challenges & triumphs of Cornelia de Lange Syndrome (CdLS) and where we explore, learn, and share everything related to CdLS. We will learn from families, clinicians, researchers & educators and those exploring new frontiers relevant to the CdLS community.
Podcasting since 2022 • 10 episodes
CdLS Connections
Latest Episodes
Majda Ficko - Dimitre's Legacy
Dimitre was born in 1997 and was diagnosed with Cornelia de Lange Syndrome shortly after birth. Dimitre's mom Majda Ficko shares her life with her son Dimitre and how it shifted her career in a new direction and through Dimitre, continues to ke...
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1:26:44
Brave Heart - Warrior Spirit, Emily Turner
Join us for a conversation with Emily Turner at the recent US CdLS Foundation Eastern retreat in Oxford, Pennsylvania. Emily shares her journey to independence and her current life with her dog living in a tiny house. Emily describes how she ha...
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Season 2
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Episode 3
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25:36
Molecular Testing at Age 33- Leanna's Story
Join us to hear the story of Leanna who has lived with the diagnosis of CdLS for over 30 years. Only last year at the age of 32 did Leanna receive molecular testing to find out that she did not have Cornelia de Lange Syndrome but another rare s...
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Season 2
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Episode 2
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2:30:56
Meet Madison - a thriving young woman with CdLS
Elaine is Madison's mom. Elaine shares the triumphs and challenge of parenting Madison from diagnosis to Madison's life as a young adult in her 20's developing independence. Elaine shares her journey of how she created a community in Milt...
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Season 2
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Episode 1
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1:58:59
