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by Canadian CdLS Foundation
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- Mar 31, 20261h 49m
Ep.#17 💜 Family Series: Marci Dunning - Freya's Mother
In this episode of the CdLS Connections Podcast, we sit down with Marci Dunning—mom to Freya and creator of Freya’s Lucky Arm—for an honest and heartfelt conversation about parenting, resilience, and showing up authentically. Marci shares her journey raising Freya, the power of confidence and advocacy, and what it means to live openly and unapologetically in the rare disease community. Her story is a reminder of the strength, love, and connection that brings families together. This episode a...
- Oct 14, 20251h 36m
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 their fitness journey. Maria shares Ella's early years and how a serious medical emergency helped her in finally accepting the diagnosis of CdLS. Maria shares the meaning of writing her blog in the early days and how circumstances moved her to entrepreneur...
- Aug 26, 20252h 23m
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 Community. Send us Fan Mail Support the show Thanks for listening to CdLS Connections brought to you by the Canadian CdLS Foundation. Stay connected with our community at www.canadiancdlsfoundation.com and follow us on social media for more stories, support and...
- Jul 23, 202535 min
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 research and first hand parent experience. The quality of the audio is less than optimal due to the recording of a live virtual event. We recommend you download the slides to view along with the presentations here, or watch the webinar on our YouTube chan...
- Jul 3, 20252h 21m
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 with Cornelia de Lange Syndrome (CdLS). Ken reflects on fatherhood, advocacy, music, partnership, and the emotional reality of navigating complex medical systems. Through Tammi’s story, this conversation explores both the joy of raising a child with CdLS and the painful r...
- Jun 8, 202541 min
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 meeting his wife Ulzi, starting a family, moving across continents from Mongolia, back to Mexico and to Switzerland. He shares his journey with receiving the diagnosis, his role as a father and the challenges on accepting the diagnosis, the impact on their m...
- Jun 8, 20251h 10m
Ep.#11 - 💜 Family Series: Charlotte Nordin - A Mother's Journey & 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 the challenges, spiritual perspectives and practical ways to find balance in the day to day. You can watch this podcast in video format on our YouTube Channel: https://www.youtube.com/@CanadianCdLSFoundation You can follow Charlotte Nordin in Instagram ...
- Nov 11, 20241h 26m
Ep.#10 - 💜 Family Series: Majda Ficko - A Mother's Journey & 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 keep his legacy alive with a skincare line. Dimitre passed away in 2021 at the age of 23. *video contains discussion about death and dying Send us Fan Mail Support the show Thanks for listening to CdLS Connections brought to you by the Canadian CdLS Foun...
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About 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.
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