31 Comments

  1. Anthony – I know some people who participated in the Ice Bucket Challenge. They told me that they had the option of checking a box that all the money you donated would go solely to research. Does it really all go to research? What if everyone checked that box who donated to ALS? How would they pay their employees, etc.? Just curious as to how things are run. Is there separate fund raisers for those costs?

  2. BOKinLarksville says:

    I guess their income is more important than the cause.. Basically it’s just a job to them.. I bet if they could make the same amount of money, they would operate a factory that grinds up puppies, and feel good about it

    1. Amelia Vargo says:

      I’m sorry but I disagree. They command high salaries but that doesn’t necessarily mean they have no morals.

  3. Maybe you don’t know what the going rate is for some of those positions, but they are not all that high. Hell, I make the same amount as a couple of them and I am not a director or an executive…not even manager. It’s not cheap to higher quality employees and look at the campaign/funds they’ve brought in.
    However, I could agree that there seems to be some positions that could be consolidated. The pharmacy research is a bit disappointing and education seems like a large portion, but one of those chicken/egg things if you want support.

  4. Too many non-profit charities direct only a small amount of their funds towards actually fighting the malady they are supposed to cure. The public is best warned to check out any organization before giving.

  5. Donations for cancer and many others are the same way. With over 66 billion a year coming in, very little of that goes for research. Not that it needs it, since cancer is a very preventable and curable disease.
    The thing is, donations today has become a big money making business, and they do not want to see it go away. Hence, there will be no cures, at least where modern medicine is concerned.

    1. Laird Beevor says:

      Finally, somebody with a modicum of sanity and education…Bravo
      Dr’s Gerson and Bragg to mention just two

      1. Dr. Peter Glidden says:

        And to mention two more: Dr. Wallach and Dr. Glidden – We both have radio shows that teach people how to reverse disease without drugs or surgery.

  6. Bruce Wayne says:

    Don’t we already kind of know the cause of ALS? Just like Parkinson’s, Dementia, Alzheimer’s, Autism? A neuro degenerative disorder caused by neuro toxicity destroying brain cells over the course of time. Don’t we also know the cure then also? Remove all MSG, Aspartame, heavy metals, petroleum’s from water, air, diet.

    1. Batman – sorry…but we do not know what the causes of ALS are…specifically. About 10% of the cases in the US are familial – meaning that it is genetic and the person is carrying the gene that may or may not cause them to suffer this disease in their lifetime. As for the other 90%, nothing definitive to say what the cause is. That is what the research is working on.

  7. Tony Nobaloney says:

    On a long enough timeline the survival rate for everyone drops to zero.

  8. Well, it seems very reasonable to me to split parts in research, caring for sick people, and educating professionals. Research, evidently is extremely important, but in this kind of diseases is also very important to try to help people who already have the disease by giving them services and improving their quality of living. In addition, it is crucial that doctors, and medical professionals are well educated in the disease so cases can be detected earlier, and treatments can be directed more efficiently.
    Concerning the salaries, they do seem high to me. On the other side, it is a bit simplistic the analysis, maybe higher salaries can afford more experienced and influential professionals… It could be that this 100 k more would be really cheap at the end if this chairman is able to lobby for certain policies or raise funds…
    Still, my knowledge of the disease is really low, but the article seems a bit demagogic to me.

  9. While you raise a good point, I have to call you out on the misleading headline and misleading use of data. “$95 Million Later: Only 27% Of Donations Actually Help ‘Research The Cure”.
    You make is seem as though only 27% of the $95 million will be used to “research the cure,” when in reality it is only a reflection of last years’ expenses (before the ice bucket campaign existed.) I would be interested to see how the pie chart looks at the close of their next fiscal year, so please update this article then.

    1. I think the article should be taken down all together for being misleading.

  10. Chris DeVere says:

    This article, and headline is misleading and sensationalist. 27% goes to direct research, but 32% goes to private and public education which directly relates to either research, researchers, or the people living with the disease and the people caring for them (you have a problem with this?), and then 19% goes directly to people living with the disease (again, really? You have a problem with people living with one of the most devastating diseases getting quality of life assistance?). To me that sounds like 78% of proceeds going directly to ALS research, caregivers, and sufferers. Bravo! You make it sound like some group of shady executives are giving bare legal minimum of the proceeds and absconding with the rest to build vacation homes. Rather than the reality of an incredibly effective charitable organization managing hundreds of millions in donations and not one executive is even making a half a million (see if you can find an investment banker managing $100,000,000 who makes less than a million…). Shame on YOU, not them!

  11. First of all, executives make that much money. Second, if you look at the actual recommendations of researchers working on ALS– they think the money should go to patient care because they have no leads on how to treat this disease and they need to know more about the disease and how it affects the body to do research. In other words, they need direction. Do your own research before you start grinding your ax.

  12. Bruce Wayne says:

    Right… just like Parkinson’s and Autism is genetic.

  13. This is seriously has no journalistic value. As someone who claims to be “dedicated to aiding various non-profit organizations” – you should know better.

  14. What you’re forgetting is 27% for direct research, 32% to help the people with ALS in their daily lives, when my cousins wife died of als last year, they had been given thousands of dollars worth of support, to include medications, counseling, electric wheelchairs, bathroom remodeling, to allow him to give her a bath and things like a special computor that allowed her to communicate with him using eye movement…as that was all she could still move…If you do your own research using independent charity rating sites you will find them highly rated. It seems most of the negitive comments I’ve seen are started or backed by religious organizations who object to the als charity allegedly using stem cells for parts of the reseach…..So what do we have then? 78% for research, education and direct assistance to those effected, 14% to raise funds and only 7% in administrative costs…those numbers look pretty good to me…

  15. Amelia Vargo says:

    I agree with you. What’s wrong with education and support? People living with this disease deserve help and support, and without educating professionals the research is useless anyway! I imagine though that the admin costs may go up as a result of this campaign so that the charity can administer the funds effectively – again I see nothing wrong with this!

  16. Amelia Vargo says:

    Sorry to hear about your brother, I hope he continues to receive support. I agree with you about the article, it’s misleading at best.

  17. Research is always longterm for such an incurable disease. It is nice to see that funds are going to those affected through education etc.

  18. Lloyd Harrower says:

    so 12% is = going to things that don’t Directly improve the quality of live for those suffering from ALS. thats better odds than the Wounded Warrior Fund.

  19. Larrylongballs says:

    Also, those are old figures and they have not officially detailed how they will distribute money from the ice bucket challenge. Also your pie chart included 32% on public education and awareness. Without raising public awareness how can they run a charity?

  20. People need to realize that for neurological diseases medical research hasn’t been all too successful, other than stroke. Most pharmaceutical remedies treat the symptoms and other than cancer and infections, most drugs do not “cure” the disease. Research is ungodly expensive and the return in “finding a cure” is extremely low. After 30 years in research, I’ve seen an increase in money going to bean counters and paper shufflers at the expense of research projects and success. The 2013 ALS Association’s expenditures report is indicative of what we’re seeing in research. Gucciardi’s article is spot on.

  21. if 32% of 94 million is used to fund education, that seems like an extravagant amount to teach us all about something they don’t know anything about! Plus they missed me and everyone I know. Personally I give food and money to homeless people because I want to help vulnerable people, not pay/contribute towards someone’s 300,000 salary. I’d rather fund a charity that is more frugal with their money and more successful with their results and research!

  22. Nosa Jeffery says:

    I Am Mrs vera, i live in Texas (USA).
    [READ MY STORY. ON HOW I GOT MY ALS CURED].
    Truthfully, i was tested ALS positive last 3years. I keep on managing the drugs i usually purchase from the health care agency to keep me healthy and strenghtful, i tried all i can too make this disease leave me alone, but unfortunately, it keep on eating up my life, this is what i caused myself, So last few 4days i came in contact with a lively article on the internet on how this Powerful Herbal Healer get her well and healed. So as a patient i knew this will took my life 1 day, and i need to live with other friends and relatives too. So i copied out the Dr samoda the traditional healer’s email id: samodaspellhome@gmail.com, and I mailed him immediately, in a little while he mail me back that i was welcome to his temple home wereby all what i seek for are granted. I was please at that time. And i continue with him, he took some few details from me and told me that he shall get back to me as soon as he is through with my work. I was very happy as heard that from him. So Yesterday, as i was just coming from my friends house, Dr samoda called me to go for checkup in the hospital and see his marvelous work that it is now ALS negative, i was very glad to hear that from him, so i quickly rush down to the nearest hospital to found out, only to hear from my hospital doctor called Browning Lewis that i am now ALS NEGATIVE. I jump up at him with the test note, he ask me how does it happen and i recide to him all i went through with Dr samoda. I am now glad, so i am a gentle type of person that need to share this testimonies to everyone who seek for healings, because once you get calm and quiet, so the disease get to finish your life off. So i will advice you contact him today for your healing at the above details: Email ID: samodaspellhome@gmail.com… CONTACT HIM NOW TO SAVE YOUR LIFE: samodaspellhome@gmail.com AS HE IS SO POWERFUL AND HELPFUL TO ALL THAT HAVE THIS SICKNESS…

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