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 • 14 episodes
CdLS Connections
Latest Episodes
Ep. #14 - Blenderized G-Tube Feeds for Individuals with CdLS
Join us for a webinar presented by Dr. Peggy Marcon M.D. and Kelsey Gallagher R.D. of Sick Kids Toronto at the US CdLS Virtual Conference in 2020 where you will learn about what is Blenderized Tube Feed diet, how to transition, findings from re...
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Episode 14
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35:43
Ep.#13 - A Father's Story - Ken Pzalfgraf Shares his Journey with Tami and how CdLS Dads was born
Ken Pfalzgraf and TammiKen Pzalfgraf is the father of Tammi who passed away suddenly at the age of 18 in late 2024.Ken started a channel called CdLS Dads to share Tammi’s life and his reflections and learnings as a father. Ken is also an...
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Episode 13
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2:21:55
Ep.#12 - A Father's Story - Meet Edgar
A fellow CdLS dad, Gary sits down with Edgar to hear a father's perspective on having a child with Cornelia de Lange Syndrome (CdLS). Edgar, originally from Mexico, is the father of Daniel, a young boy with CdLS. Edgar shares his story of meeti...
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Episode 12
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41:47
Ep.#11 - A Mother's Journey- Charlotte Nordin & Vera
Join us in a conversation with Charlotte Nordin, mother of 13 year old Vera who was born with Cornelia de Lange Syndrome (CdLS). Charlotte shares her journey as a mother, finding meaning and how this gift has opened her heart. Charlotte shares ...
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Episode 11
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1:10:52
Ep.#10 - A Mother's Journey, 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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Episode 10
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1:26:44
