#icebucketchallenge

I have been challenged by a few folks to do the #icebucketchallenge that has gone more than viral…. That’s a great thing right?   The fact that it went viral on social media and has raised awareness for ALS/Lou Gehrig’s disease – Awesome! At any given time in the USA more than 30,000 people have this disease and more than 5000 people die from it each year. There is no doubt it is a terrible disease. I accepted the  challenge(s), of course……

My grandfather, and inspiration to become a volunteer firefighter, had a very similar yet less known disease: Cerebellar ataxia. He died from it much too soon. These Motor Neuron Diseases ( Like ALS and Cerebellar ataxia ) are horrible things to have, and to witness the degeneration of a loved one is torture for both the person with the disease as well as the people who care for them. I am  very sad that I didn’t live closer to help through the years that he fought it.  This topic is “close to home” for me…

I was on a trip for business in Portland, OR when I got a call from my family saying that my Grandfather was in the hospital and close to the end.    I stepped out of a meeting and took the call. It was devastating news.  I caught a flight to Kansas City, rented a car and drove down to the hospital he was in Jefferson City.   It was so hard to see one of my heroes in that condition, but I got to talk with him, he could only respond with blinks, though he did try to speak some, but the disease had progressed to the point where he was not really able, he was at the point where involuntary functions were stopping. I found it   strangely comforting though that I was able to provide some skilled palliative care for him using my   EMT skills. I have no idea how I held it together in front of him, but I did…. Of course I broke down in private. I was able to say my goodbyes….  I get a lot of things from my Grandpa Billy, my full head of hair that is slowly turning to salt and pepper.. my long earlobes… and my sense of service to others, duty and honor.   I also strive to be more like him in other ways… he was a very quiet man most of the time, but when you screwed up   and put yourself or someone else in danger you knew it…. I could go on about my Grandpa but sadly I need to get back to the point of this post… (I’ve been told over and over that my blog posts are too long and   bounce around too much) so back to the   topic…

The #alsicebucketchallenge …. If you  were hoping to see me get soaked by ice water,  I’m sorry that you are  disappointed because that isn’t  happening. (though I have taken the Polar bear plunge, and  also flailed in the Kenai River near Soldatna, Alaska   right after breakup  – the seat on the  boat broke and dumped me in, I  nearly died (another guy  fell in on the same day and did die)  So…..  I have  had my share of cold water….

I have been conflicted on the challenge….. I’ve watched videos of friends and family, While I support   research for Motor Neuron Diseases like ALS , I also support research for many other diseases and causes… I donate a LOT… I’m not bragging OR complaining….. I usually donate anonymously or in someone’s name in memorial,   my donations are just that.. donations to  a cause, not something to get credit for or attention, I do it privately unless I am trying to get other people to donate 😉 so my conflict isn’t about the money…

I’ve seen several different views on this   particular viral activity to raise money and awareness for ALS,  from overwhelmingly positive support, creativity, diversity and downright funny  activity  .   To extremely negative people talking about the water wasted….I’ve seen people saying that they don’t need the money because the number of people that have it is small, …. I’ve even seen people saying that if you support the challenge that they don’t want to be your “friend” on Facebook because of the wasting of water… ( but doesn’t the water go back into the aquifer?   And it’s not like we can send our personal water to people right??). I’ve also seen ambivalence and ignorance and finally I’ve seen people  tired of  seeing it and hearing about it… ( Kind of like that  headache medicine commercial  a few years back –  HEAD-On  apply directly to the forehead.. Head-on apply directly to the forehead… head  on… SHUT UP ALREADY….    and while I’m not  quite at that point (yet) with the ice bucket  challenge,  I do think that it has run it’s  course, successfully  creating awareness and  raised a huge amount of money for ALS  research.

One of my issues with several of the videos I’ve seen is the amount of people that don’t even mention the cause, or they do but not in a way that really gets the point across or clearly states the purpose of the challenge… I’ve seen people just dumping or getting ice water dumped on their head and then calling out other people…. I’ve mentioned that on a few people’s posts   and add the hash-tags. So far people have been cool about it (pun intended) and donated or mentioned that they were sorry they forgot to mention the cause.

Another issue or conundrum is the whole water thing… there are droughts all over and   over 780 MILLION people without access to clean water and here we are, the 1st world,   dumping perfectly good water on our heads…. I get that it  goes back into the “system”   but it still seems like a slap in the face to those countries and people suffering .. and yes I know we can’t box it up from home and ship it there… and I know they aren’t sitting around watching YouTube videos of us doing it,  but it’s the principle… I support water.org to help provide clean water and solutions   to try to help….so I feel that if I did  the icebucket part that I’d  be  hypocritical…

water

 

My final issue/conundrum is how much is enough?  They’ve raised over 94 Million dollars so far through this effort… 94 million dollars for ALS research. That’s AWESOME, but how much is enough? What about all the other causes ( Like all the Cancers, and T1D, depression, PTSD, herpes, ebola, aids,  the environment, wildlife… and and and and….) some of these organizations have   become big business   rather than charity… some   are backed and probably owned by   big pharma who may or may not really be interested in finding a cure…. How do we know?   There are ways to research some of that.. but who   really takes the time to do that ..wellllllll  I do … before I donate my hard earned money to a charity, I look at their figures and public information. If your CEO and  executives make over 200K a year just in salary,  than you’re not a charity in my book…

perfect example – The Wounded Warrior Project  –  CEO   takes over 300K a year in salary… really??    And the ALSA – the organization that this challenge is supporting – their CEO pays herself $297K a year… ( probably more now huh?) it just seems so wrong to me …..I understand a livable wage for your family but it just seems greedy to me… maybe they donate it back somehow.. I don’t know their lives or stories or history,   but really it’s   big business for sure… and tax free at that… (obviously the people have to pay taxes on their income I think, but that’s not the point) I still donate to some of these “corporations that don’t pay taxes” .. Like the American Cancer Society   (CEO Makes almost $880K in salary!!), JDRF (CEO takes no Salary, but the three people below him all get paid over 300-500K each year)…….  I’m not saying don’t donate to   these “rich” charities but just be aware and make informed choices, look  to see how much of your money  goes to the cause that you’re  wanting to support and how much goes  to administrative  costs… I use http://www.charitynavigator.org  as well as public records  to   research  where I’m donating… ….. I guess I’m passionate about it because I want to start a charity of my own… when I do, I will have to have a source of income, at first I will have to work outside the organization to make a living, but eventually it will take up all my time (I hope!) and I will have to take a salary from it, as well as compensate my “employees” but it will be fair.. not exorbitant… I feel that   the salaries of the executives of a lot of the charities out there are exorbitant and I don’t think that my donation should go to help line the pocket of someone. I want my money to fight for the  cause… not make someone rich…

Take the   National Ataxia foundation as an example – their  TOTAL   salaries and benefits for the ENTIRE organization  –  under 200K … and the CEO, well guess what –  there isn’t one… no one in that organization makes a mint off of their cause…

I do not look down on anyone that does the challenge, supports the cause, supports other worthy causes… I don’t look down on anyone really…  and I laugh and enjoy watching the videos…and  applaud anyone  who  makes a  positive difference in the world in  any way they can.. if that is dumping ice water on  your head that is awesome in my book!

Bottom line – I accept all the challenge nominations I have received, and I am donating  –  not to alsa, but to  another ALS  charity (amount undisclosed but above the $100 Challenge) to Project ALS http://www.projectals.org/

The CEO gets compensated $157K a year and lives in New York… I feel that is fair compensation.  They  have the highest rating possible on Charity Navigator and 90% of   every dollar  is spent on research programs.

ALS

To anyone who nominated me , thank you for the nomination!   ALS  and  MNDs are terrible, horrible no good really bad diseases and  as much research that can be done to  fight these terrible diseases and find a cure is  fantastic!  I thank you for making a difference!   YOU DO!!!!

And  I wouldn’t be  me if I didn’t  say: Stay Safe, Be Kind, Keep the Park Clean, Pay it forward, Make a Difference and One Love – http://wp.me/p2RcFA-3Z

~Mikey

 

 

 

 

 

 

 

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