ALS, My Father, and the Ice Bucket Challenge

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In order to write this I have to end my ALS silence. Most of you don’t know my father has ALS. He was diagnosed over a year ago. This disease is all too real for me, my family and my father.

The Ice Bucket challenge may be silly or frivolous to you, but to me each bucket of ice water means hope. It means hope for the future battle of ALS. Each bucket also means a smile on my face, my family’s faces and my father’s, because we don’t feel so alone. ALS is now something you have all heard about and are talking about.

As my family and I were watching the news yesterday I pointed out a friend’s brother, a successful CEO, taking on the challenge. In that moment I realized how amazing this simple act is. As silly as it seems it gives hope to so many people. It gives hope to me in a time when my dads ALS is progressing and simple things like giving me a hug are becoming almost impossible for him to do.

Last year the ALS Association’s budget for the entire year was around $19 million and during the same period last year $1.9 million was raised. As of today $31.5 million has been raised!

I want to thank several friends I’ve seen take on this challenge. Most of you didn’t even know how ALS was directly affecting my life. I want to let you know how important it was to see you step up to the challenge. My heart felt like it was going to burst every time.

Sadly, I am also seeing a steady stream of posts about how sick of this challenge people are, that it is wasting water, etc. How did we become so cynical? ALS is currently in the spotlight and yes there are many other illnesses and crisis situations that we could be addressing. But for the first time ALS is getting a spotlight and instead of bashing this social media phenomenon can’t we pause for a moment and see the bigger picture. We need to ask ourselves questions like, what is this fundraising phenomenon teaching us that we can use to support other causes and situations? Why belittle this challenge? Why not learn from it? And most importantly, what is it teaching us about our humanity?

The Ice Bucket challenge is a game-changer for ALS. Looking back 10 years from now we will see a huge leap forward in understanding, life-expectancy and medical support. We will owe it to a very chilly, but heart warming gesture.

If you’d like to donate to the ALS Association: http://bit.ly/alsfunding

Another personal look at ALS and the Ice bucket challenge: http://youtu.be/h07OT8p8Oik

#IceBucketChallenge #StrikeOutALS

 

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