Critics of ALS Ice Bucket Challenge Should STFU & Learn More

By now you’ve definitely heard of the ALS Ice Bucket Challenge to raise awareness and funds for ALS.

In the trending campaign, people are asking 2-3 of their friends to dump a bucket of ice water over their heads. If your friends do not accept the challenge within 24 hours, they must donate $100 to an ALS association of choice. 

The Internet sensation – taken on by celebrities, famous athletes, high-profile CEOs, politicians and everyday people – has created an unprecedented spike in donations for ALS research.

According to ALS Association President Barbara Newhouse, the organization has never been in a “better position” to fight the fatal disease.

“We will be able to strategize about efforts in ways that previously would not have been possible,” Newhouse said in a statement on Saturday.

As of Sunday, the organization has received $13.3 million in donations since July 29, compared to $1.7 million during the same period last year. And ALS Canada has collected nearly $133,000 toward its $1 million goal

Even with the increased awareness for one of the most devastating diseases known to humankind, there’s plenty of haters. Critics of the movement have voiced numerous complaints, including:

  • It is annoying and fills up my social media feeds;
  • It is trendy and feeds into the narcissism of the western world. People should simply donate to the cause instead of dumping water on your head;
  • It is a waste of clean water;
  • It supports stem cell research which is morally offensive, instead we should pray for a cure;
  • It’s another case of classic avoidance of ‘real’ worldwide issues.

To the haters, I’m sorry that this positive campaign is annoyingly filling up your social media feeds. Fear not, it will only be a matter of time before the non-stop pictures of cats lying on sofas and selfies of your ‘friends’ return to your timelines.

And while I agree that videos of pouring ice water over your head is downright ridiculous and people should just give to the cause, it is bringing people hope. Yes, people truly should be more philanthropic, but most people aren’t. This crazy campaign is working – funds are pouring in for the cause like never before and giving hope to people suffering from the disease. I’m just as surprised as the next gal, but the fact is, it has caught on and people are becoming aware of the fatal disease and giving funds to the much needed cause.

I can’t argue that clean water is being ‘wasted’ on this campaign, and yes there are horrific headlines in current news stories. But let me tell you, the devastation of ALS is just as ‘real’ as the Israel-Gaza conflict and the Ferguson protest.

That said, please know that I’m not trying to downplay war, violence, murder, racism and all the ugliness in the world. In fact, I’m often writing about these topics in hopes of raising awareness and stopping the hate. But can we not just embrace this 10 minutes of fame in the name of ALS? My dad died 17 years ago from Lou Gehrig’s Disease, and since then I’ve described the disease, I’d guesstimate, thousands of times. Truth is, people don’t know what ALS is — let alone its 100% death rate.

As for the people who are morally opposed to stem cell research, get over it! Open your minds and get educated because the cure for this disease – and others such as MS, Parkinson’s and Alzheimers – lies in underfunded stem cell research. Rigid beliefs on stem cell research is holding back policy makers and much needed funding. Prayer will not cure this disease, rather, scientists need appropriate funding to find the answers.

In terms of funding (just to put things in perspective), the annual U.S. federal budget for cancer research has been approximately $4.9 billion over the past six years. Meanwhile, every year in the U.S. citizens spend $11.8 billion purchasing bottled water, $15.4 billion on video games and $21.5 billion on pet food.

And cancer gets way more funding than ALS.

Since that dreaded day when I was 18-years-old and my dad — sitting on our living room La-Z-Boy chair — told my brother and I, “Kids, I have Lou Gehrig’s Disease,” that sense of fear and helplessness has been haunting. How can I just stand by and watch my dad die? There must be something I can do? But as it stands (even 17 years later), there is nothing we can do except increase the quality of life for people living with ALS until their dying day.

There is no cure. There is no hope. There is only a degenerative disease that traps a person’s mind and soul into a motionless body until they die.

And honestly, this is the first time I’ve felt hope since that dreaded day 21 years ago. Although my dad lost his battle 17 years ago, it’s been my dream to help in the search for a cure. Perhaps this silly Ice Bucket Challenge, and, maybe even this article, will help in increased awareness and hope for families currently living with this deadly and devastating disease. Awareness is key, and I’m more than happy to be part of this movement — I could care less what the critics are saying.

As for my own family-of-five, we will continue to annually donate to the ALS Society of BC. With all three of my young kids, we host $10 birthday parties. So we ask our kids’ guests to bring $10 in lieu of birthday presents. My kid gets to keep $5 toward a gift of choice, while the remaining $5 goes toward ALS research. Maybe you’d like to carry on this tradition within your own family?

In conclusion, I’d like to show a moving video showcasing how the ALS Ice Bucket Challenge originated. Former Boston College baseball captain, Pete Frates, is responsible for the Internet sensation. Frates, 29, was diagnosed with the disease March 13, 2012.

As it turns out, one person truly can make a difference. Grab your hankies, and watch how Frates inspired this viral movement.

If you would like to make a donation, please consider donating in honor of my later father Jim Schafer. Donate here.

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