The ALS Ice Bucket Challenge: Why I respectfully decline your nomination

Since it became headline news earlier this month, I’ve had conflicted feelings about the ALS Ice Bucket Challenge. On the one hand, I’m inspired by how many people have gotten involved. Videos like this one are a powerful vehicle, giving a voice to those effected by Amyotrophic Lateral Sclerosis (ALS). On the other hand, I’m uncomfortable with the the way the challenge is structured. Selfishly, I’ve been hoping not to be nominated. I was hoping to avoid having to choose between sharing my opinion publicly or doing something that goes against the way I choose to support causes in which I believe.

The good…

The Ice Bucket Challenge has had a tremendous impact on general awareness and fundraising for the ALS Association in the United States and the ALS Society of Canada. It’s not easy for not-for-profits to recruit new donors and while many ice bucket participants may never donate again, I’m sure that there will be a significant number of repeat donors (especially since donations come with contact information). Whether or not all participants and donors have an in-depth knowledge of the neuromuscular disorder or the organizations working towards treatments and a cure is not necessarily the point. Traffic on the ALS Society of Canada’s website has skyrocketed and every single time someone posts another video, brand recognition is strengthened. This new found brand awareness will undoubtedly have a positive impact on Walk for ALS events. Did you know that June is ALS Awareness month? Me neither, but I do now. I also found out that the cornflower is the international flower of hope for ALS (more about that here, if the increase in traffic hasn’t crashed the site again).

The bad…

The Ice Bucket Challenge is just not for me.

First, I plan my giving. Early this year, my husband and I decided on a percentage of our income that we wanted to donate. We decided that we would choose two main organizations to support – one local and one international. We determined that we would set up monthly donations, which is a great tool. It helps the charitable organization to forecast their income on a monthly basis and allows us to work the donation into our monthly budget so that we are actually able to donate more than before. We chose our two charities based on ideological and administrative reasons. Basically, we found organizations doing work that we supported and then looked into how they would use our money. Charity Focus and Smart Giving are useful websites for looking into not-for-profits you’re considering (one local group we were considering based on information given to us at the door turned out to be a scam). In addition to our monthly donations, we also decided on an amount that we can afford to donate as pledges for our friends and family and in the event that we want to make a donation in memory of someone who passes away. I am happy to share that our monthly donations are being used wisely by Medicins Sans Frontieres and the special care nursery at our local hospital where our daughter spent the first week of her life last fall.

Second, one of the causes (if I can call it that) that I am most passionate about is the environment. I try to have a positive impact on our natural (and built) environment through my words and actions. I can’t throw a bucket of ice water over my head when so many people around the world and in Canada don’t even have access to a reliable source of clean drinking water and the world’s supply of fresh water is disappearing at an alarming rate. My husband and I have made changes to our habits and our home over the past year to reduce our water consumption – it’s just one bucket, but I’m not comfortable with the symbolism of pouring it over my head.

The ugly…

ALS is a terrible disease, effecting thousands of Canadians.  It is also not a terribly well-funded disease. Here are some facts from the Walk for ALS website.

Amyotrophic Lateral Sclerosis (ALS) also commonly known as Lou Gehrig’s Disease, is a rapidly progressive and ultimately fatal neuromuscular disorder that causes the degeneration of a select group of nerve cells in the brain and spinal cord. As the nerve cells die, people with ALS lose control of their muscles, which makes breathing, eating, even smiling almost impossible.

  • Approximately 3,000 Canadians live with ALS
  • Two to three Canadians a day die of ALS
  • ALS can strike anyone, regardless of age, sex or ethnic origin
  • The usual age of onset is between 55 and 65, but some individuals are diagnosed before the age of 20
  • Nearly 80 percent of people with ALS die within 5 years of diagnosis. While some live longer, others die within a few short months
  • ALS is a costly disease that affects patients and their families – emotionally, physically, and financially

 from the Walk for ALS site

 My Solution…

Rather than posting a video of me doing the Ice Bucket Challenge, I sat down this evening to write this blog post. I invite everyone who reads it to visit the links to the ALS Society of Canada and the Walk for ALS site. I would also encourage you to take a look at Charity Focus and Smart Giving to see how donations are used at any not-for-profit you support or are thinking of supporting (there were a lot of pleasant surprises and some disappointing facts when I was researching organizations earlier this year).

So yes, despite fears that I may come off looking up-tight or sanctimonious, I am respectfully declining the nomination to do the Ice Bucket Challenge and I hope you will respect that I have every right to make that choice.

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