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.
Moira McCarthy was pursuing her dream career in active sports journalism when her young daughter was diagnosed with Type 1 Diabetes in 1997. While she continued on that route, writing for the New York Times Sports and Leisure Division, Snow Country Magazine, Ski Magazine and becoming a daily newspaper sports columnist for the Boston Herald, she also began dedicating much of her life to diabetes advocacy and education. Author of the best-selling “Raising Teens With Diabetes: A Parent Survival Guide”, and “The Everything Parent’s Guide to Raising Children with Diabetes,” she is a long-time JDRF volunteer. She chaired JDRF’s Children’s Congress, was National Chair of Advocacy for three years and National Chair of Outreach, and was named the 2007 JDRF International Volunteer of the Year. She speaks national about raising children with diabetes and thriving in that life. Her daughter, who graduated college in May of 2014, is her proof that people certainly can.