If you are on Facebook, you probably have heard of the ALS Ice Bucket Challenge. If you have never heard of ALS (Amyotrophic lateral sclerosis, more commonly known as Lou Gehrig’s disease), it is a truly a horrible disease that profoundly affects the lives of the people it touches. The ALS Ice Bucket Challenge is all the rage right now – it has raised awareness in a big way and has raised a lot of money (millions more than this time last year) that is going to research and to local ALS chapters that help families living with this awful disease.
When my best friend from high school challenged me, I didn’t accept because it is cool or fun but because it is a worthy cause: I am thrilled that ALS is getting much needed awareness and am happy to be a part of it. So, my hubby held the camera and my darling daughter gleefully dumped a bucket of ice water on my head. Em’s laughter at her poor drenched mother at the end of the video is so sweet…what you don’t get to see is her doubled over, laughing hysterically.
Anyway, I am challenging you, my readers to do this challenge. I don’t want to put anyone on the spot, but I do feel that we in the rare disease community should help each other – if you cannot physically do the challenge or donate, I just ask that you go to alsa.org and educate yourself about ALS and share about it on Facebook or twitter or your blog or somewhere. Just as everyone of us would love to have awareness raised for EDS, we should all stick together and help others in the rare disease community.