I thought it would be "neat" to run a challenge for a "week" that would create a little excitement on Facebook to see how many people we could have posting pictures of themselves with zebras, or with people with WAGR, or dressed up as zebras...just a little something fun which doesn't involve pouring ice water over ones head.
"Neat" doesn't begin to describe it...and apparently "a week" isn't long enough to do it.
And, apparently, when the Brits and the Aussies get going, they JUST.DON'T.STOP.
I'm not kidding you! So, in the first week we had about 112 Facebook posts! Cool. My blog had seen a great boost in readership, and it was all about WAGR, so that's an EXCELLENT sign that we are raising awareness. Yay!
Then I was out for the day, but saw a message from a friend in England who said, "I think you quit too soon." Hmmm...well, when I logged in to Facebook and saw all the new tags I had in people's photos, I knew what she meant. There was a huge response to her #WAGRzebrachallenge. I was being tagged in photos around the world!!! LITERALLY!
So, since August 20th, there have been posts from Japan, Australia, England, Scotland, Dubai, Jumairah, Greece, Turkey, Bulgaria, Hong Kong, Canada...AND MORE! We have also had pictures posted from (as near as I can track) about 28 of the 50 United States.
The Facebook page for the International WAGR Syndrome Association has had 26 new "likes"...having started the challenge with 304, that's a pretty significant increase!
My personal blog, the one you're reading right now, usually has about 1,000 views on a busy month; but in the past month has had over 2,500 views.
Truly, this has been an amazing outpouring of support. I'll be turning this all over in my head to plan how we can recognize Rare Disease Day 2015 by doing a similar challenge (and I'll be sure not to take any teaching jobs during that time so I can sit captive to my laptop and mark down all the BILLIONS of posts.) I'll be excited to share this story with the people I meet in November when I attend the regional conference for NORD, the National Organization of Rare Diseases!
If you aren't familiar with Rare Disease Day (RDD), you can read my post from RDD 2014 "Why Care that We're Rare?" It's always easy to remember WHEN Rare Disease Day happens because it's ALWAYS the last day of Februrary...since February is a rare month with 28 or 29 days, that makes it the logical choice! Mark your calendars NOW!
Thank you, again, for the response to the #WAGRzebrachallenge, and for continuing to learn more about, and spread more awareness of, WAGR/11p Deletion Syndrome. Our families are forever grateful for your love and support.