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Category: Success Stories

A Super Hero Like No Other

Posted on January 18, 2018 Edited January 18, 2018 by Meghan Howard

Abde Maziane and MM’Arts Pictures created an inspirational video about living with ectodermal dysplasia. How do you see yourself? Watch the video to see how Abde views having HED. A different perspective can change your world and the world of those around you. For all of us at CEDSA, like Abde, you are a super […]

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Joshua’s Journey

Posted on January 15, 2018 Edited January 18, 2018 by Meghan Howard

Meet Joshua and the Cote family from Cape Breton and follow their journey from diagnosis through to the wonderful team at IWK Health Centre in Halifax that gave Josh his new smile and confidence. It is a journey similar to that of many families living with ectodermal dysplasia.Thank you to Joshua and his family for […]

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Sharing – Care

Posted on May 16, 2017 by socdev_admin

Kyle is 10-years-old and has X-Linked ED but he doesn’t let that stop him from playing sports! Like most Canadian kids, he is a hockey fan and plays in nets as a goalie. He also plays baseball and soccer. This vest swells up in water and keeps him cool while he plays. His mother Kim […]

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Jacob receives cheque to stay cool

Posted on May 16, 2017 by socdev_admin

Jacob is a busy four-year-old who loves to jump off, well, anything, and prefers to run instead of walk.  CEDSA would like to thank Horton Township who donated the cost of an Arctic Heat vest to Jacob so he can stay active without getting sick.  The vest is being custom-fit and will be ready in […]

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Alexa wins Arctic Heat Vest Contest

Posted on May 16, 2017 by socdev_admin

Alexa from western Canada is an active and talented dancer who has not let her ectodermal dysplasia syndrome slow her down.  Alexa won our draw for a free cooling vest donated by Arctic Heat. Congratulations Alexa! […]

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Kyle’s New Vest!

Posted on May 16, 2017 by socdev_admin

With the proceeds from one of our 2011 fundraisers, CEDSA was able to purchase a new child size cooling vest from Arctic Heat for Kyle!  His mom Kim says he is “really happy” and we are too – we hope it brings you a lot of relief this summer Kyle so you can enjoy the sports […]

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Have a story you would like to share? Pictures or news about your journey with ectodermal dysplasia are welcome – we all learn from each other’s experiences. Please contact us and send any material you would like us to run in our next eNewsletter.

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