May I Have Your Attention?

If you spend any time on social media, watching TV or reading the newspaper, by now you’ve undoubtedly heard of the extraordinarily successful “Ice Bucket Challenge” that has raised record-breaking donations for ALS research.

It goes like this: You pour a bucket of ice water on your head while someone makes a video of your antics, upload it to social media, then challenge friends to do the same or make a $100 contribution to the ALS Foundation, which funds research to find a cure for amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease. ALS afflicts about 30,000 Americans, attacking the nerve cells and eventually causing total paralysis, most often within two to five years of diagnosis. It is debilitating, terrifying and, ultimately, fatal.

Though dismissed by some critics as “slacktivism”—an all too easy, narcissistic and short-lived way to feel good about yourself for giving to a good cause, with no lasting impact—the Ice Bucket Challenge, as of this writing, has attracted support from celebrities ranging from the New England Patriots to Jimmy Fallon and raised more than $15.6 million for ALS this August, compared to $1.8 million during the same period last year. You read that correctly—a more than seven-fold increase. And that, my friends, is nothing to sneer at.

I’m thrilled for the ALS Foundation that they’ve been so successful. I have known good souls who died of this scourge, and a friend’s husband was just recently diagnosed. I hope and pray that all this money may somehow buy him and others like him some time and better quality of life.

But, of course, now I wonder . . . what would it take to draw that kind of attention and donations to scleroderma research for a cure?

A few folks in the online scleroderma community have been wondering the same thing. Suggestions range from sticking your hand in a bucket of ice water for a few hours to simulate severe Raynaud’s, to wearing a scuba diving suit that’s a few sizes too small to sample tight skin.

What about something more playful—a Mummy Wrap Challenge—you know, that silly game where you wrap up your partner in rolls and rolls of toilet paper to look like a mummy? At least it might get people to laugh, even as they developed some glimmer of what it feels like to be trapped in your own skin with this rotten disease. Maybe Scott Brands could be a corporate sponsor. (I’m kidding. Really.)

All of this copycat daydreaming begs the broader questions: How do you break through the clamor of fundraising demands for so many good causes to build lasting awareness and a solid donor base for scleroderma research? And how do you do it in a way that doesn’t trivialize the cause itself?

I can just imagine, on the heels of the Ice Bucket Challenge’s success, that we’ll soon be inundated with all kinds of attempts to be clever and cash in on self-perpetuating viral social media campaigns for various diseases. As it is, every single organization trying to raise disease awareness has a walk of some kind, including for scleroderma. These walks are successful, up to a point, raising needed funds. But they have also become so ubiquitous that they begin to merge into the white noise of our over-programmed lives, attracting mostly those who already know about the disease in question.

There are just so many, many ways that our bodies can break down. And there is a limit to our attention spans and compassion for so many illnesses. Which, ultimately, is why there’s so little government funding, relative to the need, for research into the so-called “orphan diseases” that afflict smaller numbers, compared to, say, cancer or diabetes.

If all of the foundations devoted to finding cures for obscure auto-immune diseases, including scleroderma, banded together, would we have a better chance of raising awareness and donations for cures? Is there research that cuts across all auto-immune diseases that could benefit those who suffer from the all-too-many variants? Would there be more cooperation and knowledge sharing among medical scientists? Would we have more clout in Congress?

I wonder. One thing is certain, though. The Ice Bucket Challenge proves that there are plenty of people out there with good intentions and money to give to find cures for terrible diseases. It’s just a matter of getting their attention and holding it long enough to dump out a bucket of ice water on a hot summer’s day.

In the meantime, please consider supporting one of these fine organizations that are working toward a cure for scleroderma:

Photo Credit: gfred via Compfight cc

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

Comments

  1. Nanci Brosseau says:

    Good morning Evelyn. I love your blog and I am actually going to share it with the members of my Scleroderma Support Group here in Minnesota as a discussion point. I was thinking the same thing related to the Ice Bucket Challenge….if only Scleroderma could get even half of the attention…how great would that be? Some day maybe. Thanks for sharing your heart, inspiration and wisdom.

    • Thanks, Nancy! One of the best outcomes of the Ice Bucket Challenge is the discussion it’s prompting. I read this article by Seth Godin this morning, very on-point:

      http://sethgodin.typepad.com/seths_blog/2014/08/slacktivism.html
      He makes several important observations:

      1) The Ice Bucket Challenge succeeded in part because it was a grass roots effort, not a corporate strategy.
      2) If organizations get too caught up in sizzle, they lose sight of the work that needs to be done for lasting impact.

      I don’t have the answer for raising scleroderma awareness, but I do believe, ultimately, we’ll have more success if the broader issue of auto-immune diseases gets addressed, as a joint push for research. Best wishes to your group!

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