Why I'm Not Participating in the Ice Bucket Challenge

If you use social media or watch the news, you may have heard of the ALS Ice Bucket Challenge. The idea is that a person has ice water dumped on him/her and then challenges others to do the same. If they don't want to be doused, they have to donate $100 to an ALS foundation. At first, I wondered how ALS could be benefiting with so many people opting to have water thrown on them instead of donating. However, it has morphed into people suggesting that you donate $5 if you choose the bucket or $100 (I've also seen $25) if you opt out.

I am not participating for several reasons, but first, I'd like to give my readers some background information.

I studied non-profits in college, as well as fundraising. I've spent the first five years of my career in non-profits, the last four of which, I assisted with fundraising. I have a little insight into the world of raising money and it's not easy!

This challenge has had a wonderful impact on fundraising for ALS foundations. In fact, the Wall Street Journal reports that the ALS Association "raised $7.6 million in donations in two weeks. That compares with $1.4 million raised during the same two-week period last year." 

Image from www.alsa.org

The movement was actually started by golfers trying to raise funds for the various charities they support. It took off for ALS funding due to a golfer that had the debilitating disease.2 The ALS Association was caught off guard by the money raised but of course, they're on board with the movement (as shown in this image from their website). Any non-profit is going to be ecstatic about the increase in funding but it also takes a lot of work from their staff to keep up.

I am 100% in support of any grassroots campaign that helps raise awareness and funding for a great cause. My issue with the Ice Bucket Challenge is that people are gladly dumping freezing water on themselves but they aren't spreading the word about what the disease is or educating anyone in the videos. We're missing a great opportunity to inform the public about ALS. One issue I heard about fighting diseases is getting the word out about what it is. I view this campaign as a way to follow everyone else and dump water on your head while maybe donating some money and feeling good about it, not as informative in fighting the ill-informed.

Therefore, since I've been called out by a great friend to join in the challenge, instead of dumping a bucket of water on my head, I've written this blog post with the facts about ALS below. It is my hope that my not dumping ice water on myself, I can educate those around me about this horrible disease. 

What is ALS?
I have heard ALS described as slowly being entombed in your body. I can't imagine what that would be like and the pain each person and their families go through. ALSA.org defines the disease as:

"Amyotrophic lateral sclerosis (ALS) 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."

Many people have probably heard of it refered to as Lou Gehrig's Disease. He brought the disease to the public's attention in 1939 and it ended his career as a baseball player.

The disease is not fully understood and this huge increase in funding is bound to help researches learn more. Even worse, there is no cure for ALS. The Association's website sites one drug is helping and there are therapies that help slow down the progression of the disease. 

Quick Facts About ALS

• 5,600 people per year are diagnosed with ALS each year.1
• The life expectancy for a patient is an average of two to five years after they're diagnosed.1
• About 25% of patients live longer than five years.1
• About 5 - 10% of cases are passed through family lines There are many possible causes for the roughly 90% of people who have the disease where it doesn't occur in family history.3
• Anyone can get ALS. It doesn't discriminate based on race or ethnicity.1
• It can strike at any age but usually presents itself in middle-aged people.3
• There is significant cost for each person with ALS as the disease progresses. They require significant medical care, medical equipment, and usually in-home care toward the end of the disease.1
• A drug approved by the FDA in 1995 can increase the life of a patient by several months. It can also prolong the higher function states and slow the disease. There are other promising drugs in the works.1

I wanted to do more than just dump water on my head and give money. This challenge encouraged me to learn more about the disease and I hope my readers learned something as well. I'm hoping that in liue of the bucket, I have helped spread information to make a difference. It is a terrible disease and what's worse is that there is no cure. I am shocked at the speed it takes people's motor functions and, ultimately, their lives. Patients, their families, and researches must be excited about the prospects that this grass roots fundraiser has provided!

“Increased awareness about ALS is critical to help us learn more about the disease,” said MDA President and CEO Steven M. Derks. “But what we need more than ever is action. Together, our collective actions can translate into significant progress against ALS. We hope everyone will join us to fight back by making a donation at mda.org and participating with us at a local MDA event in your community.”3

If you haven't participated in the challenge, or at least donated, please consider taking action. We've found cures for numerous diseases and through research and perseverance, we can fight ALS. 

Facts and information seen in this post came from:
1 ALSA.org
2 wsj.com
3 mda.org