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.
Episodes
12 episodes
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
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
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
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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Episode 9
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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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Episode 8
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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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Episode 7
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1:58:59
Interview with Voices for Ability Radio
Voices for Ability Radio interviews the Canadian CdLS Foundation Founder & CEO about CdLS and the current work of the Foundation.
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Episode 6
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30:48
Journey with Sandro - Grace's Service Dog
Join us for a previously recorded webinar with Kelly Hall-Berenesky to learn about her daughter Grace's Autism Assistance Service Dog. Grace lives in Red Lake, Ontario and was born with CdLS and as with many individuals with CdLS, anxiety...
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Episode 5
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46:09
Rebound Therapy - with Jenn Evans
Jenn Evans is a Physiotherapist, certified Rebound therapist and a volunteer Clinical Advisor for the Canadian CdLS Foundation. Jenn shares with us a form of therapy that is fun, beneficial and relatively new in the Canadian landscape. Jo...
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Episode 4
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1:00:39
The Cyclical Journey with Grief - with Carmen Wilde
Join us as we share the grief journey of a CdLS diagnosis. Carmen practices soul medicine in Calgary, AB and is a mother of three children. Her middle child Eli was born with CdLS and shares her story of receiving the diagnosis and how that has...
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Episode 3
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1:18:20