Donation to CORD by Family of Daughter with Dyskeratosis Congenita
In August 2015, the family of Nicole “Nikki” Butler provided a donation to CORD, in memory of their 23-year-old daughter who passed away in May from complications of dyskeratosis congenita. Dyskeratosis congenita is a disorder affecting mucous membranes, affecting approximately 200 people worldwide, 20% being female.
Nicole’s family chose CORD, in the hopes that we will keep working hard to raise awareness about the disorder and to emphasize the importance of genetic research to the government, “so that someday a cure can come about for some of these disorders.”
CORD wishes to thank the Butler family and commits to following through on their wishes to raise awareness for rare diseases.
Event
RARE DISEASE DAY 2024 CANADIAN ILLUMINATIONS
On February 29, 2024 these monuments will be lit up in honor of Rare Disease Day. #LightUpForRare Amherst Town Hall in Amherst Nova ScotiaBrampton Clock TowerBritish Columbia LegislatureBritish Columbia PlaceCalgary TowerEdmonton High Level BridgeEdmonton TowerFred A. Lundy bridge in Newmarket, ONMississauga City HallNanaimo BastionNiagara Falls (10:00pm – 10:15pm.) [Live cam link: https://www.earthcam.com/canada/niagarafalls/?cam=niagarafalls_str]Niagara sign in Thorold/Niagara regionOakville Town HallOlympic Cauldron Vancouver Convention CentrePeterborough City HallSales Of Light VancouverScience World Vancouver (FEB 28th)Signal Hill in St. John’s, NLThe Hamilton SignToronto CN TowerToronto Sign in Nathan Phillips SquareVaughan City HallVancouver Convention CentreThe Peace Bridge between Canada and the US Winnipeg Sign Winnipeg Bridge Let us know if there are other Canadian illuminations to add. Tag us on social media @raredisorders (Twitter/X), @raredisorders_cord (Instagram) or email us at info@raredisorders.ca with your photos of the monuments and Rare Disease Day events.
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