THE BLOG
08/27/2014 12:29 EDT | Updated 10/27/2014 05:59 EDT

Why the ALS Ice Bucket Challenge Is Worth It

The fact is there will always be people who need help. There will always be critics who seek to divert attention to a "more worthy" cause. But the bigger picture here is a vast community is coming together to raise awareness and drive change. Thanks to the help of social media, people of all ages, professions and life circumstances are donating.

Buckets of iced water continue to spill over heads. Smartphone videos continue to fill our social media newsfeeds. Donations continue to skyrocket. And criticism continues to pour in.

Over $70 million has been raised for ALS research so far. Yet, critics argue the challenge is a waste of clean drinking water, and has more to do with one's attractiveness in a wet T-shirt than the disease itself.

In fact, many have said the campaign is not good for philanthropy at all. Macleans' Scott Gilmore calls it a clever marketing gimmick, noting ALS research is not an urgent need and the money would be much more valuable if donated to diseases with a higher death toll.

"Even if a million Americans donate $100 each to ALS, the net positive effect on the world might well be very small," Felix Salmon writes in Slate.

But it's not small to Amanda Ritsma, a 26-year-old med school student who lost her father to ALS when she was 12.

"How many people know about ALS now, that didn't before?" Ritsma asks. Ice bucket challengers may not be able to describe ALS as a 'neurodegenerative disease that causes rapidly progressive weakness due to muscle atrophy.' But they're searching it on Google, they're looking to learn. "They now know it is a devastating disease with no cure, and it is very underrepresented," Ritsma says. In her mind, the awareness in and of itself makes every drop of spilled water worth it.

Ritsma carries the familial gene for ALS. Seven of her relatives have died because of the disease. Most recently, it took her aunt, who passed away last Christmas. Her aunt's son, Ritsma's cousin, also died from ALS and he was only 25-years-old.

Once a person is diagnosed with ALS, they are told they have two to five years to live. "The road to death is not a peaceful one," says Ritsma. "ALS destroys your body slowly and painfully. It takes away everything we take for granted."

When Ritsma's father, Bill, was diagnosed, he was living with his wife and children in Australia, where he was taking his masters degree in special education. He was 32. The Ritsma family returned to Canada, where Bill battled ALS for the next four years.

The disease started in Bill's legs -- first one, then both. He became dependent on crutches, then a wheelchair. Eventually it moved to his arms, and continued upwards into his voice box. "His voice became so weak, he had to catch his breath before he could continue talking," Ritsma says.

Soon, he needed help eating, and even breathing.

But the disease never reached his brain. Ritsma says her dad was very thankful for this. "His intellect was always a big part of his identity," she says.

There is a wide range of changes people with ALS may experience. For many people, it does not cause any changes in behaviour or thinking. "It's kind of a double-edged sword," says Ritsma. "You're still cognitive of everything that's happening. You're watching your body fade away and you're so very aware of how dependent you become on everyone around you."

Eventually, the disease moved into Bill's internal organs, leaving him too weak to battle the pneumonia when it struck. But it was ALS that killed him. It's ALS that continues to leave the Ritsma family wondering who will be next.

The emptiness Ritsma feels over losing her dad will always remain. "I was robbed of not having a father for most of my life," she says. "But still, I got 12 years with my dad, and I'm very thankful because I would never be the person I am today if not for the values he and my mom instilled in us," she says.

She describes with pride the strength of her mother, who helped mask her dad's pain to protect the kids. She speaks of the memories of her father candidly, recalling how, when he was no longer able to drive, he took her brother and sister to soccer practice on the back of his wheelchair. She remembers how he would intuitively know when she was feeling upset, and what to say to make her feel better. The memories of the person he was will always be more vivid in her mind than the disease.

Typically, the pains of grief start to fade with time. But for the Ritsmas, it's never over. "And it's never going to really be over unless we do things like what's happening right now -- we raise awareness and raise money so we can find a cure."

As grateful as Ritsma is for the ALS ice bucket challenge, the viral campaign has also exposed an extreme sense of fear. Ritsma has a 50 percent chance of getting the disease. But it's not only the looming nightmare of her own diagnosis that scares her. Ritsma has four younger siblings. "The thought of one of my siblings getting it is enough to stop my breath," she says.

Yet Ritsma continues to hold an optimistic view on life, refusing to live in fear of what she can't control. When she gets leg pains, she doesn't automatically assume this is the beginning of the end. She visualizes a long life ahead. "Trust me, if I was trying to YOLO I would not be in med school doing 26-hour shifts in hospital work," she says.

When asked what a cure would mean to her, Ritsma grows quiet. "I just got shivers when you said that," she says. "It would affect so many different aspects of my life." The greatest feeling would be relief, she explains. "And then not having to decide whether I want to have kids or not, because that's unfortunately a very realistic decision I'm going to have to make."

Still, even with the excitement surrounding the ice bucket challenge, the thought of a cure feels very distant to her. "It's on the same kind of wavelength as asking someone what it would be like to win the lottery. Or what it would be like if I could bring my dad back," she says. "I can't imagine what life would be like without it."

So, yes, there is merit to some of the arguments against the ice bucket challenge. The fact is there will always be people who need help. There will always be critics who seek to divert attention to a "more worthy" cause. But the bigger picture here is a vast community is coming together to raise awareness and drive change. Thanks to the help of social media, people of all ages, professions and life circumstances are donating. Philanthropy is now trending -- this is positive for everyone.

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