"Suffering the Slings and Arrows of Outrageous Fortune"

My challenge…

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.



Comments on: "My challenge…" (5)

  1. In the UK MacMillan Cancer a charity has hijacked this and are still calling it the ALS Ice bucket challenge but are then getting people to donate money to them. I find this particularly distasteful and despicable when cancer charities in the UK already receive the lions share of funding. It hurts even more because a close friends father is dying from this disease. I wanted to raise awareness of what has happened in the UK and the hijacking of this challenge.

    • That is crap. My daughter and I were just talking tonight about how it doesn’t need to be ‘either or’… it can be ‘both and’ when it comes to awareness and donations. I could be jealous but I am thrilled for the ALS community. For one cause to highjack another cause’ s successful campaign, ugh, just despicable.

      I am sorry to hear of your friend’s father, it is so tough on everyone involved. Thanks for sharing what is going on in the UK.

  2. Sorry your link doesn’t work alsa.org it takes you to the American Society of Landscape Architects. Thought I would let you know.

    • Gosh, thank you! Obviously I meant it to go to the als association website… I just don’t know how I made the same mistake twice: once when I typed it in the text and once when I embedded the link. Must have been the dousing with ice water over my brain! 🙂

      Thanks for catching that rather big mistake!

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