CdLS Connections
by Canadian CdLS Foundation
Latest episode
Ep. #22 - 💜🏥 Clinical Series: Dr. Antonie Kline & Amy Kimball…
Ep. #22 - 💜🏥 Clinical Series: Dr. Antonie Kline & Amy Kimball…
About this podcast
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
The newest 20 of 22 episodes
- Ep. #22 - 💜🏥 Clinical Series: Dr. Antonie Kline & Amy Kimball - HDAC8 Gene in CdLS · 49 min · Episode 22CdLS Connections | Understanding HDAC8 and Cornelia de Lange SyndromeWhat does an HDAC8 gene variant mean for someone living with Cornelia de Lange syndrome (CdLS)? In this…
- Ep. #21 -💜🏥 Clinical Series: Dr. Antonie Kline & Amy Kimball - SMC3 Gene in CdLS · 51 min · Episode 21Understanding the SMC3 Gene in CDLS — Clinical Findings, Inheritance & the Future of Gene Therapy Watch this webinar on YouTube: https://youtu.be/iFPM8fMV1ow Join the Canadian…
- Ep. #20 -💜🏥 Clinical Series: Dr. Matt Deardorff, Victoria Duke & Dr. Lynn Kerr - SMC1A Gene in CdLS · 52 min · Episode 20💜 A heartfelt thank you to the US CdLS Foundation and the SMC1A Foundation for making this episode possible. This workshop was recorded in September 2026 as part of the US CdLS…
- Ep. #19 -💜🏥 Clinical Series: Dr. Peggy Marcon, Dr. Kathy Loomes & Dr. Rudy Sanchez - GI Issues in CdLS · 1 h 0 min · Episode 19GI concerns are one of the most common reasons families reach out for support. In this webinar, three GI experts from Canada and the US walk through reflux, EoE, malrotation…
- Ep. #18 -💜🏥 Clinical Series: Julia O'Connor PhD. Dr. Rowena Eng & Dr. Rudy Sanchez - Pain & Behaviour in CdLS · 56 min · Episode 18The Connection Between Pain and Behavior in CdLS When someone with CdLS can’t say “my belly hurts,” behavior is often how they tell us. In this workshop, a pediatric…
- Ep.#17 💜 Family Series: Marci Dunning - Freya's Mother · 1 h 49 min · Episode 17In 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…
- Ep. #16 💜 Family Series: Maria Watkins & Ella- "Life on M Avenue" · 1 h 36 min · Episode 16Maria 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…
- Ep. #15 - 💜 Family Series: Dawn Seitz Rauscher - Team Nikki · 2 h 23 minJoin 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…
- Ep. #14 -💜🏥 Clinical Series: Dr. Peggy Marcon- Blenderized G-Tube Feeds for CdLS · 36 min · Episode 14Join 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…
- Ep. #13 - 💜 Family Series: Remembering Tami — A Father’s Story, GI Complications & Advocacy in CdLS · 2 h 21 min · Episode 13In 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…
- Ep.#12 - 💜 Family Series: Edgar Solis - A Father's Story - Daniel · 42 min · Episode 12A 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…
- Ep.#11 - 💜 Family Series: Charlotte Nordin - A Mother's Journey & Vera · 1 h 10 min · Episode 11Join 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…
- Ep.#10 - 💜 Family Series: Majda Ficko - A Mother's Journey & Dimitre's Legacy · 1 h 26 min · Episode 10Dimitre 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…
- Ep.#9 - 💜 Family Series: Emily Turner - Brave Heart - Warrior Spirit · 26 min · Episode 9Join 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…
- Ep.#8 - 💜 Family Series: Brenda King - Molecular Testing at Age 33- Leanna's Story · 2 h 30 min · Episode 8Join 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…
- Ep.#7 - 💜 Family Series: Meet Madison - a thriving young woman with CdLS · 1 h 58 min · Episode 7Elaine 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…
- Ep.#6 - Interview with Voices for Ability Radio · 31 min · Episode 6Voices for Ability Radio interviews the Canadian CdLS Foundation President & Founder about CdLS and the current work of the Foundation. Send us Fan Mail Support the show Thanks…
- Ep.#4 - 💜🏥 Clinical Series: Jenn Evans PT - Rebound Therapy · 1 h 0 min · Episode 4Jenn 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…
- Ep.#5 - 💜 Family Series: Kelly Hall-Baranesky - Journey with Sandro - Grace's Service Dog · 46 min · Episode 5Join 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…
- Ep.#3 - 💜🏥 Clinical Series: Carmen Wilde - The Cyclical Journey with Grief · 1 h 18 min · Episode 3Join 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…
