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No Single Story

By Christie Hoos There is no single story which speaks the truth of Down syndrome. Certainly not the outdated pessimism of some medical professionals who see it as a life not worth living. And the more than 80% of terrified parents who terminate their pregnancy as a result. Those dark sketches of burden and heartbreak bear little resemblance to the beautiful children I know. There is no truth behind the many, many comments of “I don’t know how you do it” and it’s close cousin “I could never.” Because trust me, you could and you would. That’s what parenting is, Down syndrome or not: doing what you have to, the best you can on most days, and not so great on others. But kids are resilient. Kids with Down syndrome especially so. They have to be. I hate to admit it, but the truth does not lie in the air-brushed snapshots of perpetual happiness either. The cuteness, that’s very real. And studies have shown that families who include a member with Down syndrome experience significant amounts of joy and fulfillment. But these children are not angels come down to earth, they are human beings. Amazing and inspiring often, but also grumpy and quirky and stubborn and everything in between. I wouldn’t have it any other way. My daughter is an individual not a stereotype. She is her own unique person. She faces a larger set of challenges and obstacles than most people, and she has to work harder than everyone else. Some people say stubborn like it’s a bad thing, but that iron will has given her a toughness that impresses nurses and doctors, and is in the process of kicking cancer’s butt. She would very much like to control the entire universe (she is her mother’s daughter after all), but often finds herself at the mercy of a world that moves too quickly and unpredictably. She doesn’t take that lying down, let me tell you. She is indomitable. She has a silly sense of humour and loves to tease us with the absurd. She is gentle and sweet and undeniably charming. She insists on being called by her name, and nothing else. She refuses to be labelled in any way, not even endearments or compliments – not honey, or sweetheart, or smart, or brave, or a girl… “I’m just B” she says. She is her own category. “And though she be but little,she is fierce!”~Shakespeare This is her story, and ours. Down syndrome plays a part, and for that we celebrate World Down Syndrome Day along with so many other wonderful individuals and their families. This is no anguished outcry or demand for a cure from bitter parents, this is a celebration. Because our lives are all the more worth living since our daughter, and Down syndrome, became a part of our story. There is no single story which speaks the truth of Down syndrome, there are millions. So here’s us, celebrating 3-21-2015 for all those with Trisomy 21, also known as Down syndrome. Reprinted from Christie's blog, So Here's Us.
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Latest News

09/06/2015
On June 5, 2015, DSRF and the Children's Sleep Network hosted a webinar in which we released the results of the BC Down Syndrome Survey conducted in the spring of 2015. Click here to view the recording. Click here to download the presentation slides. Based on the results of the survey above, DSRF and a number of partner organizations are developing a Down Syndrome Medical Care mobile application, with three primary areas of focus: recording daytime and nighttime behaviours, tracking medications, supplements and nutrition, and integrating reminder and feedback notifications. We need your help! Your input and suggestions can help shape the development of this app, ensuring the creation of a tool that meets your needs and those of other families of individuals with Down syndrome. Click here to join the Facebook discussion group and have your say.
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13/05/2015
Thank you very much to the John Hardie Mitchell Family Foundation, which has provided a $2,500 grant in support of the Down Syndrome Research Foundation's educational programs for individuals with Down syndrome. We appreciate your investment in our students!
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