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Pioneering innovative therapies to improve the lives of those with genetic intellectual disabilities

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Spring 2015 Newsletter

 

We are happy to release this newsletter in honor of World Down Syndrome Day, March 21, a global awareness day set aside to raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people with Down syndrome play a vital role in our lives and communities. In case the symbolism of the date is lost on some, 3/21 (March 21) was chosen because those living with Down syndrome have 3 copies of the 21st chromosome. This discovery, made by Jerome Lejeune in 1958, began the path of advocacy that has made this day’s celebration possible. 

Prior to Lejeune’s discovery that Down syndrome is caused by an extra copy of the 21st chromosome, many thought that the disability was the fault of the parents. Some thought it was the result of a curse, and even that it was contagious, so people would cross the street when they saw a person with Down syndrome approaching because they were afraid they might catch it!

Thanks to Jerome Lejeune, we have known since 1958 that Down syndrome is not contagious, nor is it a curse. It is caused by a genetic event prior to conception. Rather than being cursed, families who have children with Down syndrome consider themselves blessed. Jerome Lejeune truly felt that each of his many patients was his brother or sister, and he loved them deeply. Twenty years after his death their affection for him and devotion to his memory remains strong. 

We have some exciting events to report in this newsletter. We will tell you about a new memorial research fund, brief you on our participation in an event at the European Parliament, introduce you to the winner of the 2015 Sisley-Jerome Lejeune Prize, and more. Our lead article in this newsletter was written with World Down Syndrome Day in mind. It points out the clash of cultures caused by conflicting views on those living with Down syndrome. 

We hope you enjoy this newsletter, and that you will share it with your friends.