The Ice Bucket Challenge…Raising Awareness for ALS

“I might have been given a bad break, but I’ve got an awful lot to live for” – Lou Gehrig

The Ice Bucket Challenge, has gone viral…with hundreds and thousands, and hundreds of thousands of people doing the ice bucket challenge to raise money for ALS awareness, a cause that is close to my family’s heart.  As a matter of fact, I’ve actually had to edit this blog, with current information about 6 times, to try to keep as current and accurate as possible.  #journalismmajor

The Ice Bucket Challenge:  People make a video of themselves dumping a bucket of ice water on their heads, post it on Facebook, Instagram or other social media sites, and then challenge friends to do the same within 24 hours or donate $100 to ALS. (Many do both).   “In the last two weeks, the Ice Bucket Challenge has quite literally ‘soaked’ the nation,” the ALS Association said on its website. Between July 29 and Aug. 12, the association and its 38 chapters have received $4 million in donations, compared with $1.12 million during the same period last year.

ALS, also known as Lou Gehrig’s disease or motor neuron disease (MND), is a progressive disease that causes muscle weakness, difficulty speaking and swallowing and generally, complete paralysis. In most cases, while the body continues to deteriorate, the mind remains unaffected. The disease does not discriminate, striking any age, gender and race. In the US, someone is diagnosed every 90 minutes, and approximately 35,000 people are living with ALS at any given time. There is no known cure for ALS and once diagnosed, patients typically live only three to five years.  Right now, there is only one FDA-approved drug to treat the disease, and it only extends survival by a few months.   That’s right, a Few Months.

I am aware that there are many nay-sayers regarding people doing the ice bucket challenge…and I am not going to give them any blog time.   What I would like to say is, the ice bucket challenge, which admittedly did not Start with creating awareness for ALS, seemed to go Viral when it was Tied to ALS.  And correct, perhaps many people are doing the ice bucket challenge and not actually donating to ALS, (www.alsa.org), but they are still creating awareness for this disease.  The true win-win is to dump the ice water on your head, and donate to ALS.

Just like Katie Couric taking a colonoscopy on the air helped raise awareness and research dollars for colon cancer, and Susan B. Komen and the pink ribbon  has helped with breast cancer research and Robin Williams’ sad and untimely death, is helping raise awareness for depression…the ice bucket challenge  is helping raise awareness for ALS.   While many people may have heard of Lou Gehrig’s disease,  many people are unaware of the specifics regarding this devastating and deadly disease.  Statistics show that only half of the general public understands ALS, and the viral challenge is making a powerful push toward informing the public about the need to fund research for a cure.    Hopefully, since the onset of this challenge, more people are educated about this horrific disease and the influx of research dollars will help bring us closer to a cure, as well as a reversal for those who already have it.  #hope

According to the New York Times, People have shared more than 1.2 million videos on Facebook between June 1 and Aug. 13 and mentioned the phenomenon more than 2.2 million times on Twitter since July 29, according to those sites. Donations to the ALS Association have spiked. As of Sunday, (updated figures) the association said it had received $13.3 million in donations since July 29, compared with $1.7 million during the same period last year. It said there were about 260,000 new donors. (With a spate of celebrities and business executives joining in over the past few days and pledging contributions, that number is expected to rise.)

I first became aware of the Ice Bucket Challenge, raising awareness for ALS, when Julian Edelman, of the New England Patriots did it on July 29th.  Julian did the ice bucket challenge, in honor of Pete Frates, a Boston College baseball player, who is bring credited as being a Leader of this movement.  Pete Frates has ALS, and he is 29-years old.  This is his story:

The story of Pete Frates

I shared the video of Julian Edelman, (shown below)  with one of my dearest,  Cathy Friedman, who is as much of a Patriots fan, as I am a Bears fan, so she up and did the ice bucket challenge.  My favorite line of hers after she dumped an entire bag of ice into the water bucket,  and poured it over her head, “This is nothing compared to what people with ALS have to endure”.  So True. Love that girl, btw!

Mr. Pete Frates said in a video Last December: “The story right now goes: You’ve got ALS, have it for a little while, a long while, but either way, the end is always the same. ALS always wins. So in order to rewrite the end of it, we need to raise awareness, money.”  And raising awareness and money seems to be happening.

And yes, my family and I have participated as well…Thankfully, I have been unsuccessful at figuring out how to post the video to this blog,  that is not via Youtube, so here is a snap shot of me dumping water on my head.  And, I’m wearing a half zip, because it was 60 degrees out, and I had on a white t-shirt, which you do not want to show “wet”, so I threw on the half zip.  Thanks to Amelia for calling me out, and thank you to my high school friends, Kevin and his hotel, and my Dallas CVB alumni gang, for continuing with the challenge as those that I’ve called out.  #family

Then lucky me, I got nominated twice.  Thank You Steven! xoxo .  And gladly did it twice. 🙂  Shouting out a nomination to Lora, NKO, and my siblings.

Patrick

Mer Mer

A few more of my favorite Ice Bucket Challenges from my favorite peeps…this is only a sampling,  (pictures, not the actual videos) of those who did the challenge while I was penning my blog, and those who either challenged me, or I challenged them.  I wish I could feature everyone.  Perhaps one day.  #longestblogever  #sobbingwhilewriting

Tracy

Steven

Carolyn

Ellen

Luke

Dana

Amelia

Mark

Joy

Some others doing the ALS Ice Bucket Challenge, that aren’t as famous as those just featured above.  These are the actual links to the video, while the above were just a snapshot picture.

Bill Gates doing Ice Bucket Challenge

The Kennedy Family doing Ice Bucket Challenge

The Chicago Blackhawks doing Ice Bucket Challenge

Charlie Sheen

My family is doing a walk for ALS on September 21st at Soldier Field…which happens to be my birthday.  I cannot think of a better way to spend my birthday, than walking with family and friends for such a great cause, and doing so at my favorite place, Soldier Field!  Join us, Team Kourage, to help raise more funds for this very cruel disease.  To date we have raised almost $5000.  Comment on this blog, or get in touch with me if you want to be part of this great cause and very fun day!  There will be snappy t-shirts provided for Team Kourage, and for all that participate, as well as a post-party.  #bribery

Song of the Day:  Wind Beneath My Wings, by Bette Midler.  Featuring my very favorite beach from the movie, Beaches.  #beachshack.  Ice, Ice Baby, would have been too obvious. 🙂

Best quote of the week from Meredith:  Watching the many videos of  the ice bucket challenge for ALS, is the new watching soldier’s coming home.  You can’t get enough of watching either.

Someday we’ll be able to name a cure after Lou Gehrig, instead of a disease.  ALS…it’s more common than you think.

xoxo,

T.

Sources:  PCMA; New York Times

http://pcma.org/be-in-the-know/pcma-central/convention-and-meetings-news/news-landing/2014/08/18/what-your-organization-can-learn-from-the-ice-bucket-challenge?e=tobrien%40hpnglobal.com&m=21933239#.U_NwhPmICCd