Don’t Roll Your Eyes At People Doing the ALS Ice Bucket Challenge – They’re Helping Cure a Disease

Joanna Schroeder talked with people who’ve lost loved ones to ALS and her mind was changed about the viral Ice Bucket Challenge video sensation. Now she’s a huge fan and thinks you should be, too.

Yes, I was dubious, too.

It seemed like a way to grab attention for ourselves, doing something silly on camera, then sharing it on Facebook in the name of helping fight a terrible, terminal disease.

But then I looked into it a bit, and it turns out that the Ice Bucket Challenge is doing a TON of good. Suddenly, people are aware of the disease ALS (also known as Lou Gehrig’s Disease) and donations to the ALS foundation have risen more than 1000%.

TIME reports:

The extremely viral ALS Ice Bucket Challenge has led to record donations to the ALS Association, whose national office reports nearly $12 million in collected donations since July 29–$15.6 million if you include money raised by ALS affiliates across the country–compared with less than $50,000 in the same period last year.

“It’s huge. It’s a game changer for the ALS Association,” said ALS Association President Barbara Newhouse.

The $12 million figure represents more than half of the funds raised in all of 2012, when the national organization brought in $19 million in contributions.

I asked my sister-in-law, Janna Bos, what she thought of the Ice Bucket Challenge. Janna lost her father to the disease in 1997. Janna told me why she did the Ice Bucket Challenge… In fact, she did it twice.

I did it for several reasons, primarily to raise the awareness of the disease and to increase donations. It is such a devastating disease and few people really understand or grasp the true way a person dies who is suffering with the disease.

All mental capacity remains intact but the muscles degenerate, eventually resulting in death from diaphragm muscle failure and inability to breathe. After watching my dad suffer with it and die, I gained a new perspective on doctor assisted suicide. Dad went through several thoughts and ideas of how to just end it because there wasn’t an option for recovery. There still isn’t an option. Just literally waiting to die.

We had another friend die of ALS as well, but she and her family chose life support, which kept her alive in a physically vegetative (but not mental) state for several years. They finally made the decision to pull the plug and let her die. Imagine that sort of family decision. Dad wanted no part of life support and he died when his diaphragm gave out.

The lovely Haley Stevens, who lost her battle with ALS at age 17.

The lovely Haley Stevens, who lost her battle with ALS at age 17.

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Another woman I know, Gretchen Teague, tragically lost her daughter to ALS when she was only 17 years old.

Gretchen took to her page to explain why the Ice Bucket Challenge matters, after she got wind of someone posting the following message on Facebook:

“..so, I’m being totally honest right now. Totally. I don’t know what ALS stands for. I’ve learned nothing and ice has raised no awareness for me. Share THAT. #lemmings”

Gretchen’s response:

I don’t know you. I don’t know your story or why you feel the need to be negative toward a disease that is for the first time in 75 years getting attention for the common man afflicted with it. ALS is a horrible disease that took the life of my 17 year old daughter. We live with the knowledge that there was and is no cure every day. The fact that people are even saying the letters means a lot.

The ice bucket challenge has done a huge thing for fundraising efforts and awareness. If you have questions about the disease ask. If you don’t care, ignore it. People dumping ice on their own heads is doing absolutely NOTHING to physically cause you pain or discomfort in your life. And cluttering up your newsfeed doesn’t even count as an inconvenience in my opinion because you can scroll past the posts you don’t want to read. Please, don’t belittle those of us who do care and are doing the ice challenge to honor the memory of loved ones who have passed and who live for the day no other mother, sister, brother, friend will have to see their loved one struggle through it.

There are enough real issues in the world. Let’s leave the ice and ALS alone. Feel free to post my comment if you want. But you know what I have learned through the ice challenge today? For every person who doubts the power of community, there are 100 who believe and experience life by making impossible connections.

You can learn more about Gretchen’s daughter and ALS by watching this Haley’s Hope video. And never let people tell you teenagers are apathetic – Haley’s classmates elected her Prom Queen her senior year, and they still march to raise money for ALS in her memory.

I’ve shared a couple of my favorite Ice Bucket Challenges: above, Bill Gates, and below the always lovely Cary Elwes, just in case you want to see some famous guys giving some love to the ALS Association and need some inspiration.

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About Joanna Schroeder

Joanna Schroeder is the type of working mom who opens her car door and junk spills out all over the ground. She serves as Executive Editor of The Good Men Project and is a freelance writer whose work has appeared on sites like xoJane, hlntv.com, and The Huffington Post. Joanna loves playing with her sons, skateboarding with her husband, and hanging out with friends. Her dream is to someday finish her almost-done novel and get some sleep. Follow her shenanigans on Twitter.

Comments

  1. I watched my father die from Motor Neurone disease. 6 weeks from diagnosis to the point we had to decide to turn off life support. I still remember vividly him in the recliner, watching tv with him, I look over at him and he was still breathing, I look again maybe 20 seconds later and he wasn’t breathing. Getting on the phone calling 000 whilst my brother attempts CPR….but no success, by the time he was on life support he was braindead. 6 weeks, it all started with him having a sore back.

    First time I ever saw my father cry was when he realized he was going to die. I think the second time was when he was getting ahead of himself and got to the door which had a 15cm step up….he tried to step up and fell over…I was just behind him and didn’t get to him in time to catch him. That loss of independance is soul-destroying.

    I was 18, he was my best friend and I already had an extremely bad depression + multiple health problems, had moved home after only a few months at college due to illness. I had time to bond with him and do father-son stuff only to watch him die. One of the most haunting memories was seeing him try to drink half a glass of water, with both hands he was shaking as if he were holding 50kg….and he spilled it over himself. A few months before he had helped me paint my room and led a very active life, loved fishing and had strength….being able to land 10-20kg fish to needing every fibre of strength to lift 250grams at best. Watching him waste away so quickly, losing something like 10kg of muscle in a few weeks, going from a 58 year old active man to looking like he was 90 in under 2 months…

    As you can guess it seriously fucked me up and I can’t remember much of the decade after as my already bad depression went into overdrive but that is how quick this disease can kill. 6 weeks and he wasn’t able to breath for himself, it’s an image forever seared into my brain. He was still 100% cognitive and knew what was happening until the day he died, hell we were enjoying watching a movie but he could barely speak, barely use his lip muscles and had to drink from a straw. 6 fucking weeks.

  2. Fisher Biskit says:

    What are your feelings on the breast cancer awareness campaigns that come up every year? Perhaps a disease as obscure as ALS is in need of awareness, but are the much-more-familiar pink ribbons helping their cause nearly as much? And should we be concerned about the objectification present in all the “save the boobies” shirts and such?

  3. @ Fisher Biskit — Thank you for bringing up the pinkwashing. Breast cancer runs in my family, and I HATE the pink tide that rolls around every fall. it’s nothing but marketing! Half the stuff sold with a pink label is carcinogenic, and all that “awareness” does nothing for prevention or cure. (There’s no money in either, duh.) Don’t get me started on all the “save the ta-tas” and “I heart boobies” stuff. It’s offensive. Cancer is not cute or sexy, and a woman’s LIFE is at stake here, not just her tits. Objectification indeed. Plenty of articles are out there on this topic, but this is a good place to start: http://thinkbeforeyoupink.org/?page_id=13.

  4. I disagree with the title.
    The ice bucket challenge is as I understand it to either pour a bucket of ice water over your head OR donate to the ALS cause. I’d say it’s rather those (like President Obama) who forfeit the challenge and instead donate to research on ALS who helps fight ALS. Those who pour water over their head without donating are basically just saying: “No, I won’t donate – ask this subset of my friends instead”.

  5. An LA Times columnist today suggested that the ALS Ice Bucket Challenge was cannibalizing donations to other charities. This makes no sense to me. I have been raising money for charities for several decades. More causes than not are noble and worthy of our attention and dollars, but just like business, some are more clever than others at breaking through the noise. Clever marketing is clever marketing, as long as it’s not lying or deceitful, creative messaging is how you bring in dollars. It’s hugely competitive, but it’s not a zero sum game. In fact, giving at all teaches people that giving should be part of our routines to the extent we afford it. This is not my particular cause, but I wish one of mine had thought of the campaign. Meanwhile it’s an excellent cause, and I applaud them for innovation and a touch of levity where we might least expect to find it, all in decent taste, and with a worthy outcome. If most of the water ends up on the grass, I’m okay with that, too.

  6. Thomas Beck says:

    There are a lot of horrible diseases. Pancreatic cancer. Huntington’s Disease. Alzheimer’s. Who’s to say which one is more horrible than another? Money given to one is money that can’t be given to another. I’m sure the people who have ALS and their family members suffer terribly, but so do the family members of people with pancreatic cancer or Alzheimer’s. Publicity is useful and I hope the money raced by the ice bucket challenge is going to a charity or charities that actually spend it on the disease and the sufferers rather than on fancy office space and vacations for the CEO. Wouldn’t it be more useful in the end, though, to stop spending tax dollars on breaks for millionaires and oil companies and devote more of it to medical research and treatment?

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