Day 146: Meet the mom who started the Ice Bucket Challenge

Have you heard of the ALS Ice-Bucket challenge? Chances are that unless you have been living under a rock your answer would have been yes. In 2014 the ALS Ice-bucket challenge exploded all over social media. Nancy Frates is the mom who started the ice bucket challenge and in her Ted talk she delivers a heartwarming and inspiring story about her son Pete

What is the ice bucket challenge?

The ice-bucket challenge involves participants pouring cold icy-water over them to give them an idea what ALS sufferers go through. What exactly is ALS? ALS stands for Amyotrophic lateral sclerosis and is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. In Nancy’s Ted talk she shares with us that  when her son hurt his wrist playing baseball it turned out to be ASL. Nancy takes us through the days and month following his diagnosis and it’s heartbreaking to hear that her once athletic son’s body is being taken over by this disease.

The disease may have his body but it doesn’t have his mind. Nancy shares with the audience the determination and strength  of her son’s character and how this experience has given herself Pete and their family a sense of purpose. Nancy is one heck of a woman. She’s a proud mama bear who is doing whatever it takes to help her son and in the process inspiring the masses.

To the naysayers

Nancy addresses the “naysayers” of the challenge by sharing some positives that have come out of the challenge. I am ashamed to admit this, but I was a naysayer myself.   In the peak of the ice-bucket challenge my Facebook news feed would be filled with friends participating in the challenge and nominating friends to get involved as well. Over time the challenge morphed. Not every challenge actually donated money to ALS, other charities were being donated to as well. Of course, this isn’s a bad thing, but it did defeat the original purpose of the challenge and it left me kind of confused as to what exactly ALS is anyway. I also started to wonder if the people participating in the challenger were any wiser as to what the condition was about anyway.

I was pretty disillusioned when I read the story of one participant in a challenge who became the subject of an death hoax. Basically a bogus news site claimed she died from the challenge when a bucket smacked her on the head.  It turned out to be a hoax but the teenager ended up licensing the  video through a  viral management company. I only hope, if it’s in fact true, that any revenue she earns gets donated to ALS.

I ended up googling the disease myself and it’s pretty heartbreaking stuff.   I am really glad that I got to hear Nancy speak as she put the human element to the ALS ice bucket challenge she brought home what it is really all about and positive consequences of the massive awareness being raised.

To the naysayers (myself included) Turns out that the challenge raised 220 million  for ALS. That’s a pretty significant figure.  In addition Nancy shared some pretty amazing news such as the fact that ALS TDI in Cambridge has fast tracked clinical trials for a drug that was three years away to being funded to two months away. How amazing is that.

If you want some further information about the ALS or would like to donate the ALS Association is a pretty good starting point. I would also love to hear about your experience with the ALS challenge. Feel free to share your stories in the comment box below.

Vanessa Rose