I was recently nominated by one of my best friends to do the ALS ice bucket challenge and while I understand the "terms" of this, I have let the 24 hour deadline pass and will not nominate anyone in return. This is not because I don't think ALS is an unworthy cause or because I am "no fun". I choose not to pour a bucket of ice over my head because I think a lot of people are doing this for the wrong reasons.
I know that the ALS foundation has earned a lot of money from this challenge and I think that is an AMAZING thing. It's a terrible, crippling disease and research needs to be done to find a cure, or at least find a way to better manage the progression of the disease. I know a lot of celebrities and even some "regular" individuals have donated a lot, or a little bit, of money to this cause and have done all they can to raise large sums of money.
But, the fact of the matter is a lot of people are doing this to simply "jump on the bandwagon". They think, "Hey! I was just nominated to dump a bucket of ice over my head, so I'm gonna make a video that all my friends and people on Facebook can see and then make more people do it so I don't have to raise money,". "It will be fun," they say. So, they make their video, they post it online using whatever social media they prefer and then they don't think twice about it.
That is the WRONG reason to do the ice bucket challenge.
This challenge was started by the ALS foundation to raise awareness for their cause and to raise money to be used towards research and anything else that would help people see how terrible this disease is and how many people are affected by it each year. It is a great idea. I have seen several social media posts about it, watched segments on the national and local news, and read articles in newspapers about how this is sweeping the nation. It's great to see people doing this for the right reasons... Dumping a bucket of ice over their heads and then raising/donating money for a great organization.
It was NOT started to become a social media "bandwagon" phase, similar to planking and the cinnamon challenge.
Even though I will not be donating money to the ALS foundation (like I said before, it's a great cause and I have nothing against the organization), that doesn't mean I won't be donating money. In fact, I donate money every year to a charity that is near and dear to me.
My brother was diagnosed with Duchenne Muscular Dystrophy at a young age. This male affected neuromuscular disease is a process of muscle degeneration where muscles turn to fat as the disease progresses and muscle use is no longer possible. Usually by the age of twelve, boys with Duchenne are confined to a wheelchair because calf and thigh muscles have begun to degenerate into a fatty mass. Talipes sets in, which means the soles of the feet turn inward, and contractures of the knees and elbows are common. Contractures are the shortening of muscles due to prolonged immobility, in the case of Duchenne, from sitting in a wheelchair with no muscle use in the legs. Slowly joints become fixed and arms and legs are no longer able to be stretched out to their full length. As the person progresses into their teenage years, many Duchenne Muscular Dystrophy patients develop scoliosis, which is the curvature of the spine, because back muscles no longer support the body in an upright position. A spine straightening procedure may be used to correct the curvature by inserting metal rods with hooks into the spine. This is a relatively common surgery among those with the disease and the recovery time is just a few weeks. In addition to muscle limbs having degeneration, heart muscles also lack necessary dystrophin and they begin to degenerate as well.
The diaphragm and other muscles in the lung also begin to weaken. Symptoms of weakening lungs include difficulty breathing, headaches, and trouble concentrating and staying awake. With the weakened lung muscles comes a greater chance for infection and the common cold can easily lead to pneumonia. Males affected by this disease usually live until their mid twenties, possibly their early thirties, with a cause of death being heart or lung failure.
In other words, the disease sucks and it honestly heartbreaking to watch someone so close to you go through something so terrible. It sucks to know that no matter what you do, you can't make it better or go away. It's a terrible, crippling disease and I HATE that my brother, and others like him, have to go through all this pain.
But, that being said, it has made me a more compassionate person because you never know what someone is going through or facing in their everyday life. You can't judge a book by it's cover. It has also let me get to know about an incredible organization; the Muscular Dystrophy Association (MDA).
Ever since I was a little girl, my family was involved in various MDA fundraising benefits, Christmas parties, and other events to raise money and awareness of neuromuscular diseases. I have gotten to know many families and individuals who are affected by terrible muscles diseases, but still find a reason to smile and keep pursuing their dreams. It's truly amazing how much this organization really cares about those that they are trying to help.
I'm sure people have seen the "Fill a Boot" fundraisers done by local firefighters. I'm sure people have watched, or at least known about, the annual Labor Day MDA "Show of Strength" telethon. I'm sure people have at least heard the name Jerry Lewis in passing. These are all people or fundraising feats done in support of the MDA.
Because of my brother and this wonderful organization, I have an "Ice Bucket Challenge" to complete each and every year....
Besides from the fact that I help to "Fill the Boot" whenever I see one or the fact that I always donate a few dollars everytime I see one of those Shamrocks that stores post on their walls, I have made a personal donation to MDA every single year for as long as I have remembered. It may not always be a lot of money, but each year I make my donation. I fully believe in the MDA foundation and the research they are doing every year. I watch the Telethon, which usually makes me sob like a baby when I watch the stories of those affected by muscle disease, and I donate whatever I can at the time. It may not be tomorrow, it may not even be when my brother can see the benefits, but I truly hope that one day, there will be a cure for neuromuscular disease.
But, none of this research can be done if no one is watching and listening and donating. Research is expensive and it needs donations, no matter how big or small.
So, this is my challenge to you. Pick something you are passionate about. Do you know someone that has passed away from cancer? Do you have a family member who is facing a disease that doesn't have a cure? Do you love the fact that a certain hospital let's patients attend without facing any medical costs, like St. Jude's? Has Robin Williams' death affected you so much that you don't want anyone facing depression to go unnoticed? What makes you passionate?
Decide this and then go out and donate. Maybe it's just buying a pink ribbon for breast cancer that goes to support research. Maybe it's throwing a few coins into a local collection bin. Maybe it's taking matters into your own hands and raising money from friends and family to donate a large sum. Maybe it's running/walking in a Pancreatic Cancer 5k or Heart Walk. Anything is better than nothing.
Don't just jump on the bandwagon and complete a challenge because social media asked you. Question why they are doing this. Where the "craze" started. How you can learn more. Why they need your help. Challenge yourself because you want to. Not because you want your friends to see you post a video.
*I also just want to say that I'm not knocking anyone for completing this challenge. By re-posting videos and nominating others, you are keeping the awareness going and that's always a good thing. And I know sometimes life sucks and money is tight and it's not always possible to donate. This is just my take on how I think some people are doing this for the wrong reason... It's so much more than dumping a bucket of ice on your head. It's a foundation and a movement that will benefit so many people. It's something to be passionate about. It's something to learn from.
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