ice ice baby

Unless you’ve been living under a rock this summer… you undoubtedly know about the ALS Ice Bucket Challenge. Hats off to whoever came up with the concept of the challenge, what a wonderful idea to raise awareness and much needed funds for such a horrible chronic disease!

 Whether you think the idea of dumping ice water on your head for charity is silly or not, you can’t argue with the amount of money raised (over $100M in eight weeks, click here) or the power of the challenge to start a conversation about rare diseases. The funding campaign went viral, and that’s an amazing achievement for such a demographically small and marginalized group of rare disease patients. Most people refer to ALS as Lou Gehrig’s disease – a sad reality that unless someone famous is diagnosed with a disease the public doesn’t recognize it. 

National Myositis Awareness Day is around the corner (September 21) and I wonder if we in Myositis can come up with a similar (yet unique) viral challenge. I realize a lot of other patient organizations will be having the same thought, however, that should not stop us from trying. I challenge you to put on your thinking caps and make Myositis Awareness a global sensation in 2015!

And don’t forget, if you have still to participate in the ALS Ice Bucket Challenge, to mention Myositis as well! You can piggyback our cause with theirs and raise double awareness!!! Check out Mo’s video from last month!


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