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 • 16 episodes
CdLS Connections
Latest Episodes
Ep. #16 💜 Family Series: Maria Watkins & Ella- "Life on M Avenue"
Maria Watkins is a mother of five children, their middle child Ella was born with CdLS. Her and her husband live near Sioux City, Iowa, USA. They have a small farm, juggle work, a business, and their busy family and have recently started on the...
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Episode 16
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1:36:09
Ep. #15 - 💜 Family Series: Dawn Seitz Rauscher - Team Nikki
Join us for a conversation with Dawn Seitz Rauscher as she shares her journey and her life with Nikki who passed away ten years ago at the age of 17. Nikki’s memory and legacy lives on in her family, community and the global CdLS Communit...
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2:23:00
Ep. #14 -💜🏥 Clinical Series: Dr. Peggy Marcon- Blenderized G-Tube Feeds for 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 - 💜 Family Series: Remembering Tami — A Father’s Story, GI Complications & Advocacy in CdLS
In this deeply personal episode of CdLS Connections, Ken Pfalzgraf shares the life and legacy of his daughter Tami, who passed away at age 18 in late 2024 due to complications related to a gastric duplicative cyst associated wit...
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Episode 13
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2:21:55
Ep.#12 - 💜 Family Series: Edgar Solis - A Father's Story - Daniel
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
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