Does Diabetes Need an Ice Bucket Challenge?

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If you don’t know what the ALS Ice Bucket Challenge is, you may just have returned from a trek to the tundra. And if you have yet to do the challenge, you may just be the Pope. (But be ready, Pope: Shakira challenged you.)

The Ice Bucket Challenge is a social media sensation that started in Boston, where a young former athlete with ALS challenged five friends to dump buckets of ice over their heads and donate a small amount to ALS research, or not to dump and donate more.

From there, it went more than viral. Millions have taken part. And while many may not “get it” or may not have donated, donations to ALS this quarter are in the $40 million range and growing. (Nearly $20 million came in just one day) Last year? The total in this time was about $110,000.

The Ice Bucket Challenge combines celebrity (Boston pro athletes and movie stars were drawn to the story of a former Boston College athlete battling it; once those celebs went at it, more did), hot summer fun (everyone wanted to dump iced water over their heads), our hyped up online community where everyone wants to make a splash, and “sex appeal,” (starter and ALS patient Pete Frates and his wife, expecting their first child, are downright beautiful on the inside and the outside.) All those things combined for the perfect storm of PR and awareness. And good for them.

It is total rock-star worthy grass roots-at-its-best stuff. It makes use of all the “tools” the world loves today; Facebook, YouTube, and more, and it uses them in maybe the best way most have ever seen. As someone who has long been involved in both advocacy and fundraising, I’m going to say it knocked my socks off.

It’s understandable, then, with the incredible attention the ALS Ice Bucket Challenge is getting for those of us in the diabetes community to be in awe, to be inspired and okay, to be a little jealous. After all, ALS is getting a boost like we’ve never seen before.

So you might be surprised by what I’m going to say here: I don’t think the diabetes community needs an ice bucket challenge. At least not right now. Nor do we need a spin off challenge of any kind.

Some diabetes community folks might not like me saying this. Right now, in this moment in time, ALS might just need it more than we do. (Disclaimer: ALS has touched me personally in the past year. Here is my story.)  ALS is a barely-understood, horrible disease with little advocacy, or research. Curt Shilling did his part back in 2004 when he wrote “K-ALS” on his bloody sock during the world series. But other than that, not much has gone on.

Then comes this Ice Bucket Challenge, which started literally down the road from me. And really, some of it was just “luck” for the ALS folks (I hate using the word ‘luck’ here, but you know what I mean.)

And we don’t need to take any of that from them.  Online and in person I encounter diabetes folks saying, “We need a challenge!” One mom started a “pie in the face” thing. Another suggested a “five finger prick challenge”. Some others suggested having people do the ice bucket and ask for awareness of ALS and diabetes, and donations to both.

That all feels wrong to me, and to my daughter, who has battled Type 1 diabetes for 17 years. “Mom,” she said to me today, “Why can’t our community be thankful another community is having success? Why isn’t that enough?”

It should be. And it has been before. Because like all good neighbors, the diabetes community has looked out for other communities in the past. Take 9/11. From the moment the towers came down, it was clear to those of us advocating and fundraising for a cure for diabetes that it was not the time to push that. And so we held back for a time and let charities help victims and their families. It meant a pretty hefty drop in donations to some diabetes charities that year but you know what? In the long run, it meant an increase. Because our “neighbors” appreciated our sensitivity and support.  A few weeks ago, for example, I was speaking at an event of a major company that supports JDRF. An executive said one of the big reasons he is so passionate about JDRF is because JDRF was so passionate about that company’s loss of employees in 9/11. “I knew then you guys were the good guys,” he told me.

And after the Boston Marathon Bombing, we all had to step back and do for others as well. Why? Because it is what our world needed at the time. And sometimes, someone else’s pain or situation trumps ours.

Even when we have diabetes.

We have far to go in the diabetes world. We always need more awareness. And while we fund hundreds of millions of dollars of research annually, we still need to fund more. But things are better, way better. We now have meters covered by insurance. We have a few types of insulin to choose from. We have CGMs. Smart pumps are in clinical trials. A trial for “encapsulated islet cells” is about to start. And our life span is officially longer. So long as we get the care we need and work hard every day, our lives with diabetes will be as long as the lives of people without diabetes.

So let’s keep doing what we do so well in the diabetes world: walk, ride, dance, juggle, whatever, and help fund whichever diabetes organization it is that jazzes you. And remember, the time will come again when we are the community in great need. Perhaps a final push to get approval for a better treatment, or legislation needed to allow some kind of research.

November, Diabetes Awareness Month, is right around the corner. And when that time comes, as good neighbors, I’m sure the ALS community will be here for us.

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51 Comments on "Does Diabetes Need an Ice Bucket Challenge?"

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Paige

My friend, the time has come!!
Help my friends and I promote the Diabetes Egg Crack Challenge in honor of my friend, Will Hauver, who passed away last week due to complications from the flu/diabetes. This is an effort to raise funds for Type 1 Diabetes and JDRF, and it has gone quite viral already!
http://www.buzzfeed.com/pkennedy24/death-of-22-year-old-will-hauver-prompts-diabetes-1ba3a

Megan

My brother recently passed away. He had type 1 diabetes. Before passing away, he made this video. His friends, family, and teammates are now trying to carry the “LIV-abetes egg-crack challege” on in his memory.
https://m.youtube.com/watch?v=fqg3ZvEb6Jc

Karen Davies

I really like the waking up at 3:00 AM and taking a picture of their view and posting it. For us, we could wake up and take a picture of our child and post. Some parents with non-T1D kids could take a pic of their child and be thankful that they do not have T1. Such a great idea and not wasteful and very meaningful! …this was an idea on Canadian Parents of diabetic children site!!! Great idea!!

Karen Davies

I really like the waking up at 3:00 AM and taking a picture of their view and posting it. For us, we could wake up and take a picture of our child and post. Some parents with non-T1D kids could take a pic of their child and be thankful that they do not have T1. Such a great idea and not wasteful and very meaningful! …this was an idea on Canadian Parents of diabetic children site!!! Great idea!!

Chris Higgins

At the beginning of summer, the Cold Water Challenge was going around. You got challenge your friends to jump in a lake,river or pool. Or give to a charity of the challengers choice. Many donations were pledged to T1D.

Chris Higgins

At the beginning of summer, the Cold Water Challenge was going around. You got challenge your friends to jump in a lake,river or pool. Or give to a charity of the challengers choice. Many donations were pledged to T1D.

Indieconch
I do not agree that “T1D hides because the patient seems well.” My partner (at 35) lost a tremendous amount of weight (and was eating ALL THE TIME because he was skinny to begin with), went from perfect eyesight to needing eyeglasses, and then, the kicker, he started passing out. THEN his doctors started to run blood tests and found he was insulin resistant and clearly T1D. He was very obviously not well for *years*, and it took his pancreas almost completely pooping out on him to wake up his doctors. EVENTUALLY, his illness was brought to light, and he… Read more »
Indieconch
I do not agree that “T1D hides because the patient seems well.” My partner (at 35) lost a tremendous amount of weight (and was eating ALL THE TIME because he was skinny to begin with), went from perfect eyesight to needing eyeglasses, and then, the kicker, he started passing out. THEN his doctors started to run blood tests and found he was insulin resistant and clearly T1D. He was very obviously not well for *years*, and it took his pancreas almost completely pooping out on him to wake up his doctors. EVENTUALLY, his illness was brought to light, and he… Read more »
MARK
I appreciate your point of view on this. I’m not quite sure of my own, just yet. My father died of ALS. My wife and son are T1Ds. I haven’t done the ice bucket challenge and haven’t been inspired to donate either. I actively fundraise and advocate for T1D funding. I view things through the following practical lens: 1. T1D doesn’t need a fad fundraiser — we have taxpayer supported research initiatives that are driving toward a cure or vastly better management. We also have a rich tradition and broad network for fundraising. Also, the disease affects children in recognizable… Read more »
MARK
I appreciate your point of view on this. I’m not quite sure of my own, just yet. My father died of ALS. My wife and son are T1Ds. I haven’t done the ice bucket challenge and haven’t been inspired to donate either. I actively fundraise and advocate for T1D funding. I view things through the following practical lens: 1. T1D doesn’t need a fad fundraiser — we have taxpayer supported research initiatives that are driving toward a cure or vastly better management. We also have a rich tradition and broad network for fundraising. Also, the disease affects children in recognizable… Read more »
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