Friday, October 3, 2014

ALS Ice Bucket Challenge

I'd like to say a few things about the ALS Ice bucket challenge.

First, it was done to raise AWARENESS of the disease. If you don't know by now, Amyotrophic lateral sclerosis (ALS) is often referred to as "Lou Gehrig's Disease," and is a progressive neuro-degenerative disease that affects nerve cells in the brain and the spinal cord. That was taken from the ALS site,

Second, like some people, I too thought to criticize the challenge because there was a PERCEPTION that people were only pouring cold water on themselves, and not giving money to the cause. In some ways, the only criticism should be that if you did the challenge, you were to donate LESS money than if you didn't do the challenge.  The truth is, no one knows how much one actually donates, and no one should ever criticize how much anyone donates to anything, because that's their own business. And the proof is there. Last year, just under $3 million was donated to ALS. This year, they're already topping $100 million.

But, where are we now? Awareness was raised. Now the next step is, "Understanding."

ALS is a disease that progressively disconnects the brain from the muscles in your body.  Your brain works, your muscles work, but your brain is slowly unable to tell your muscles what to do. So let's imagine ourselves with the disease. You progressively get weaker, you have trouble walking. First you use a cane to help you walk, then you need a powered wheelchair, then you need someone to push you in a wheelchair. This degenerative process could take years.

But that's just simplified. There is more to it than not being able to walk. You can't feed yourself, you can't bathe yourself, you can't dress yourself, you can't work and earn money. Eventually, you can no longer do anything and are confined to a bed. You'll need to be fed by a tube because you can no longer swallow. Then you need a mechanical respirator because you can no longer breathe on your own.

In the meantime, someone also needs to help you do things. That means that they too, can not work, because you are now their full-time job. In a perfect world, we may not have the disease, or we have a cure for it. In a better world, we have some type of assistance for people who get this awful disease. Awesome insurance that pays for a Nurse or a facility to help you. In the real world, without a job, people struggle financially. Maybe someone in the family can become a caregiver. Now that's two with no income. It becomes overwhelming.

I know. I had to care for my own mother, although she did not have ALS. It is very hard, but I was lucky to have a job with just the right hours, and siblings that did what I couldn't, when I couldn't.

I also know someone who has ALS and is struggling with it.  She has bills to pay, and had to sell her car and eventually leave her job because she was no longer able to do it.  She has a loving Adult teenaged daughter that is now her caregiver.  And she has friends that look after her needs.

Unfortunately, my friend has also had bad experiencse with the ALS Association, and would much rather have people donate to ALS Guardian Angels. She questions where all the money goes to at ALSA.

According to Charity Navigator, an Independent website that researches Charities, and rates the ALSA High in Transparency, 72.4% of the ALS Association's budget was used for program expenses — that is, the programs and services the ALS Association delivers to the ALS community according to its mission, such as professional and public education, research into ALS treatments and cures, and patient and commmunity services. Of the remaining budget, 11% went to administrative expenses and 16.5% to fundraising expenses.

But what are program expenses? "Overhead" could be where their office is located and "Program" could be where they conduct monthly meetings in different areas for People with ALS or "PALS." When my friend went to meetings, they were not given water and/or even a snack. There would always be less than 10 PALS there with their Caregivers or "CALS." 

The ALSA claims that a caseworker is assigned to each PALS, and they are paid a salary. This could also fall under "Program Expenses." She has not been visited or had telephone contact with her caseworker in over 1 year. If she has not been visited by a salaried employee, how many other PALS have also been neglected as well? 

Another example, a Gala took place at the Roosevelt in Hollywood that could be considered a "Fundraising Expense (16.5%)." However, if the Gala is for PALS, CALS, Researchers and those that are going to be recognized by ALSA, why was the Gala made to be something so out of reach with a price of $300 a ticket? You'd think by using donations for Fundraising Expenses at 16.5 %, maybe people with ALS could have gotten tickets at a discounted rate or maybe even, free? And at $300 per ticket, wouldn't you say that the fundraiser was paying for itself? My friend has had her own fundraisers and benefit concerts and they did not have costs of 16.5% of donations. If private people can do it for less, why can't a professional organization? By not being able to go to the Gala, my friend feels that the ALSA took her voice away, she wanted to go, tell her story and be heard. But the ALSA made it nearly impossible for her to even go to a Gala for people like her.

This is a really sore subject for her but fortunately she has been connected with the ALS Guardian Angels. Everything the ALS Guardian Angels receives goes to assist PALS.  Stu, who runs the organization with others, does it because simply, it needs to get done, and they know the need is there. 

From the ALS Guardian Angels website, "OUR MISSION: Most ALS related organizations are dedicated to finding a cure. Until then, ALS patients need help living. The ALS Guardian Angels Foundation is dedicated to helping patients and their families live with ALS while maintaining the best quality of life possible."

Also to make things even clearer,  she would ask that you stop referring to a person with ALS as a "patient." Why? Patients can go to the doctor and get treated. There is NO treatment or cure for ALS. Sobering, isn't it? And anyone can get it, no one knows how or why.

So if you can, help people with ALS live a life. Please make a donation to:

My friend has her own personal fundraising page at:

You raised Awareness, you now have some Understanding, now you can take Action.

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