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%.
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.
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”
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.