My Soapbox about the ALS Ice Bucket Challenge

I am annoyed with the ALS ice bucket challenge. I feel a little guilty for being annoyed, because the ALS Association is a great cause, but all the same it really ticks me off!!

At the end of 2013 my best friend lost her 1st child at childbirth. She was able to hold her son in her arms for 1.5 hours and watched him take his last breath. My God, what that must do to a person! Several months later her older brother, who suffered depression, took his life. She's a recovering alcoholic and also gave up smoking when she found out she was pregnant- has not gone back to either, despite these wounds she now carries! My question now is what does it take to break a spirit like this? (I never want to know the answer to that) What helped greatly is this amazing non-profit that my friend found and reached out to when she found out her son had a disease (at her 1st ultrasound). This network gave her a free photo shoot and offered free counseling throughout the entire process- as in they continue to offer counseling even though the situation with her brother isn't their original purpose! What an amazing organization! 

I posted on facebook pleading with all my friends and family to make a donation in honor of her strength in courage. Not. One. Donation! I also emailed it to my family and asked them to donate, and also pass it along to request donations. Nada. Many of my friends are her friends too; not one response about it!

Every friend I've seen post the ice bucket challenge has made a comment "I don't know anyone who has gone through this, but I'm still happy to help!" That's not a surprise, and that adds fuel to the fire for why I'm pissed! THIS IS NOT THE RIGHT WAY!! ARG!

Doesn't anyone ask WHY you don't know anyone with ALS? Well, let's look at the facts:

According to ALSA.org, "Approximately 5,600 people in the U.S. are diagnosed with ALS each year. The incidence of ALS is two per 100,000 people, and it is estimated that as many as 30,000 Americans may have the disease at any given time."

That may seem like a lot in terms of suffering, and I am not saying any of these 5,600 people don't deserve awareness and help- They Truly do, but there are 317 Million People in the United States Alone. Less than 2% of the US population will be diagnosed with ALS each year, .009% in total have this disease. They have raised over $31 million with this challenge- Enough for now! Let them put those funds to good use and see where they stand after that. 

Let's compare this to something I have seen physical evidence of many times, and will probably continue to see: alzheimers. According to ALZ.org, "An estimated 5.2 million Americans have Alzheimer's disease in 2014" That would be 1.6% of the U.S. population- what are we doing for them? Where is your "happy to help" attitude for a disease you will most likely see the effects on through a loved one??

Many of the people donating are saying the government has a cure for ALS and this is to help force them to give it up. I don't know if that's true, but I do know the truth to another cure: I have friends who have participated in studies and research- there ARE cures for certain cancers and the government or pharmaceutical companies are holding on to it until rights can be determined! And I can Promise those sufferers are greater in numbers!! Why in God's Name are we sitting on our hands for Cancer? I have also made pleads with my friends and family to donate and support Stand Up To Cancer- Nothing.

Let's now talk about my own non-profit, one that I co-founded when I was 18. We have raised over $1 million for underfunded children's charities. Our current focus is getting arts and music programs back into schools across the U.S., cause let's face it: if our children and teenagers don't have an outlet for their creativity, we're going to see some messed up shit for where they find their outlet. I have made a ton of requests to have friends and family donate to this. Now this is an organization I can 100% promise your donation goes toward the cause. We do not use donation funds for employees or advertising- just the small fee to run our website.

It just doesn't make sense to me, and it just pisses me off! 

I 100% love ALSA- they are a terrific foundation. Like my own charity, they make sure to keep as much of your donation fund as possible toward the cause. They have a few paid employees, but it is modest in salary (Check out the millions paid to the CEO of the American Red Cross receive at guidestar.com if you want to be pissed off) I am glad that if people are spreading anything, it's ALS and not about Robin William's death (Do not get me started on that).

But how can you call yourself charitable because you're doing 1 good deed because it's trendy? Truly!?

I'm just disgusted.