CdLS Connections

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...

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...

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...

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...

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...