Wednesday, August 27, 2014

ALS - Ice Bucket Challenge

Well, by now you must have seen a ton of videos of everyone doing the Ice Bucket Challenge, and if not, wow, where have you been? Everyone from random strangers in their pool or back yard to big name celebrities such as Bill Gates, Sir Patrick Stewart, and Misha Collins have partaken in this event of epic proportions. Whole casts of shows to sports teams to families! We spent an hour clicking from one YouTube video to another watching all our favorite actors and big names getting doused with buckets of ice water.
But do you know why? I knew it was for ALS but was unsure of what that was exactly. Then I heard Lou Gehrig's Disease and I was a little less unsure, but still in the dark. Jareth had no clue what it was about. So we sat down to find out what this was all for. Let me share what we found out:
What is ALS (Lou Gehrig's Disease)?Amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig's Disease," is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.(Straight from the ALSA.org website.)Need a visual to go with this explination? The following link is one man's challenge video. It starts out silly and fun, but soon takes a more serious turn. I agree with everyone who says this one video may be all you need to see to understand not only the reasons behind the Ice Bucket Challenge but the disease behind it.It is being called  The last Ice Bucket Challenge video you need to seeOther stories, testimonies, realities of those that live with ALS can be found on the ALSA.org site under See The Faces of ALS.


Why the Ice Bucket Challenge?
So, from what I have gathered, here is the origin story, more or less. (Please note that if you know any of my information to be incorrect you can comment and I will make sure it is changed! Thank you!) The Ice Bucket Challenge has a very ambiguous beginning. However it seems to have stepped to the forefront in mid-2013 as a way for participants to raise awareness and donations for cancer charities. However,on June 30 of this year Morning Drive hosted the first on air challenge, attributing the event to golfers as it began to spread throughout that community. Suddenly former Boston College baseball player Pete Frates, who has ALS began to take to Twitter to get the word out. With his connections not only through sports but the organization itself, Frates gave the challenge a face for people to rally behind.  Soon the challenge began gaining ground as people began to revel in the thought of watching others partake in this shivvering event! Bigger names began to be tossed into the mix; even President Obama was challenged, although he declined, instead giving money.


How does it help ALS?
That answer is two-fold. The rules of the challenge state that participants have two choices: They can take the challenge and challenge others or they can donate $100 to ALS charities. Most participants choose to do both, most simply giving a smaller donation once they have been doused in water. (Us for example could only give $20, but we gave.) So either way, the cause is receiving much needed funds. 
This challenge is also raising awareness. As I stated, I did not know what ALS was in the beginning. Not only do I now know, my son does, and my stepmom, and my husband, and my sister. Hopefully the gamers my son challenged now know, along with their YouTube followers. Many of my friends have partaken in this, challenging their friends and family. The pastor at our Cowboy church joked about the challenge at a Sunday baptism because the water was so cold. He was challenged within the week and posted the video to the church's Facebook page, now the congregation knows.
By no means was ALS a secret before all this! However, with the average number of cases in the US only being around 30,000, not enough people seem to be effected by the reality of it to bring it the attention it needs. This disease slowly eats away at the host, leading to paralysis over the years. And yet there is only one medication out there to modestly slow the progress. That is not enough! 


Does the challenge work?
Last year $2.6 million dollars were raised over the course of time that the ALS Ice Bucket Challenge has brought in new donors this year. It may seem like a lot but it is nothing compared to what needs to be done to help research and development of medicines. How much has been raised this year? In the same amount of time? Due to the publicity of the Ice Bucket Challenge?:


$88.5 Million (number as of Aug. 26th)


1.9 million NEW donors have given to the cause. That means that between last year and this 1.9 million people have been informed and convinced to donate to the cause. 


Let that sink in for a moment.


It's not just ALS!
I must also say that this is not all about ALS. There have been numerous people that have taken the challenge and given to charities that mean more to them. As I said, ALS does not effect everyone. 
ALS does not effect my family. Do you know what does? Parkinson's. My grandmother has been diagnosed and dealt with it for many years now. My father's hands shake more than may be normal. I will one day be tested and may have to watch my children develop signs as they get old. So why did I give to ALS? Because Parkinson's has some big names in their ranks who make it a point to give a lot to the cause. Many advances have been made in the years since Michael J. Fox stepped up and showed people what this disease was. (Much like the Ice bucket Challenge is doing now!) ALS is also a neurodegenerative disease, as is Parkinson's, which means that any advances in discovering how it acts could potentially aid those studying Parkinson's. This sounds like a win/win to me. 


How do you help?
You don't have to wait to be challenged! Step up and dump your own bucket of ice on yourself and call out 3 friends! Or just donate! Go to ALSA.org and find out what you need to know and do what you need to do! Every bit helps! Get the ball rolling!


Or make the turn and bring another cause to the forefront! Who says that ALS should be the only cause we call out. I think it would be absolutely wonderful if as all the hype dies down we pick another insanely fun thing to do (people complain but stepping into ice water in this Texas heat was refreshing for Jareth) for another cause! Get out there and be the one that says "This effects me and this is what I want to do about it!" 


Our Challenges:
As I said, my stepmother took the challenge from a friend. She called out my son! Here is her video. That's my Dad taking too much pleasure from dousing her!

video




 And so Jareth did it. He challenged two gamers that he follows on YouTube and Twitter as well as my sister, Amanda! And boy did he have fun!

video





Further Links:
Forbes Talks About Why it's not Stupid
The Numbers by ALSA.org
More Info from Wiki
Some other Ice bucket challenges

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