Canadian CdLS Foundation
Canadian CdLS Foundation - supporting individuals, families, caregivers & health professionals and educators impacted by Cornelia de Lange Syndrome.
We are a Registered Canadian Charity #707263885 RR0001
03/31/2026
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.
Follow Marci & Freya: Instagram, TikTok & Facebook:
YouTube: Freya’s Lucky Arm
Also available on your favourite Podcast App: https://www.buzzsprout.com/1774404/episodes/18936767
YouTube Link in comments below for Video version ⬇️
02/12/2026
Today is International CdLS Awareness Day. A day to remember and hold dear those who have passed.
Many of our Canadian families are in our thoughts today as we remember their loved ones who have passed.
2026 Remembrance Day Video February 12th is International CdLS Remembrance Day. On this special day, we honor individuals with CdLS who have died over the years.Watch this video of som...
01/29/2026
International CdLS Remembrance Day is February 12th 2025
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Join us for an international virtual event with the World Federation for CdLS Support Groups & the US CdLS Foundation to remember those with CdLS who have left us.
Welcome! You are invited to join a meeting: 2026 International CdLS Remembrance Day. After registering, you will receive a confirmation email about joining the meeting. Losing a loved one with CdLS at any age is life-altering. Parents, siblings, grandparents, relatives, and friends experience profound grief, often accompanied by questions that have no easy answers. During these moments, the support of a compassionate community can make all the difference. Though th...
Families with adolescents and adults with CdLS often struggle with basic access to supports, services and programs to support challenging behaviours and or medical issues. Families are often left to bring their adult child to the emergency department as a last resort from where they are often placed in an adult inpatient ward. A unit that is not set-up or knowledgeable in caring for complex individuals with neuro-developmental disorders.
The investigation report into whether the Ministry of Children, Community and Social Services and the Ministry of Health are taking adequate steps to address the inappropriate hospitalization of adults with developmental disabilities will be released Nov 25th.
We look forward to seeing how our society steps up to ensure every Canadian has access to basic respectable, competent and appropriate care.
11/13/2025
More than 53,000 adults with intellectual disabilities in Ontario are still waiting for vital services. Decades of delay have left too many at risk of homelessness, human trafficking, criminal exploitation, and extreme poverty.
This cannot continue. Sign the petition today at Waiting2Belong.ca to help spread the word.
10/11/2025
Today, Community Living Ontario and Inclusion Canada issued a joint press release in light of the deteriorating labour situation occurring across many agencies in the province. You can read the full press release by clicking here: https://communitylivingontario.ca/press-release-community-living-ontario-and-inclusion-canada-call-for-urgent-action-amid-labour-dispute-impacting-people-with-disabilities/
08/25/2025
This week Wednesday join us for a virtual meet up with fellow CdLS families of School-Aged children. Just in time for the school year 💜
06/29/2025
How a Child's Diagnosis Should (and Shouldn't) Go "These two wildly different experiences showed me that the way in which a diagnosis is delivered matters greatly."
06/28/2025
We want to thank the National Bank of Canada and all their employees and retirees for their fundraising support and generosity in donating $12,000 to support our work. Special thanks to 💜Sofija Antzaras 💜and her family for their hard work in putting the application together.
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Over $250,000 raised during the 13th edition of the NB Grand Tour | National Bank Over $250,000 raised during the 13th edition of the NB Grand Tour
Our US colleagues have published their summer “Reaching Out”. Always a must read full of gems, hope and wisdom 💜
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