Monday, December 16, 2013

Rett Syndrome Awareness

October was Rett Syndrome Awareness Month.

O.R.S.A.'s goal was to have people tell personal stories about how their lives have been affected by Rett syndrome. Many people shared their stories on social media. Some got local media coverage.

One of the month's highlights was the purple lighting of the CN Tower on October 25th.  This photo from that night was shared around the world.  A social media experiment, called a "Thunderclap" helped us increase the impact of social media by sending out our "What is Rett Syndrome?" video via 121 people to thousands of followers at the same instant on October 25th.

I have told parts of Abby's story on this blog, and previously, through an article published in the Exceptional Family magazine.  There have also been a few local newspaper articles about Abby.  Still, I felt I should do my part for this year's Rett syndrome awareness.  I contacted our local CTV news station to see if they would be interested in doing a story on Rett syndrome.  I suggested Abby's new communication technology would make a good story and sent them the link to my "No Longer Speechless" blog post. 

They were interested! A videographer arranged to come to Abby's school on October 25th, coincidentally the same day as the Thunderclap and the CN Tower lighting.  Abby was thrilled with all the attention and showed us all what she could do with her Tobii eye-tracking device.

The Kitchener news story was great, but we were all surprised when the national network decided to run the story across the country on the evening of October 25th.  It also played on their news review loop throughout that weekend.  We've heard from many people who saw Abby on TV

Despite some medical challenges, this has been a good year for Abby and for Rett syndrome awareness.  This is the year of the communication device.  Abby is one of the people breaking new ground to show others what can be done when communication becomes more accessible.

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