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
16 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...
•
Episode 16
•
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...
•
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...
•
Episode 14
•
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...
•
Episode 13
•
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...
•
Episode 12
•
41:47
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 ...
•
Episode 11
•
1:10:52
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 ke...
•
Episode 10
•
1:26:44
Ep.#9 - 💜 Family Series: Emily Turner - Brave Heart - Warrior Spirit
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...
•
Episode 9
•
25:36
Ep.#8 - 💜 Family Series: Brenda King - 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...
•
Episode 8
•
2:30:56
Ep.#7 - 💜 Family Series: 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...
•
Episode 7
•
1:58:59
Ep.#6 - Interview with Voices for Ability Radio
Voices for Ability Radio interviews the Canadian CdLS Foundation President & Founder about CdLS and the current work of the Foundation.
•
Episode 6
•
30:48
Ep.#5 - 💜 Family Series: Kelly Hall-Baranesky - 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...
•
Episode 5
•
46:09
Ep.#4 - 💜🏥 Clinical Series: Jenn Evans PT - Rebound Therapy
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...
•
Episode 4
•
1:00:39
Ep.#3 - 💜🏥 Clinical Series: Carmen Wilde - The Cyclical Journey with Grief
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...
•
Episode 3
•
1:18:20