Aug 25, 2014 at 02:39 PM

ALS Association - Slow to Invest Ice Bucket Challenge Dollars in Research

By Jos Cofio

Ice Bucket Challenge Funds Intended for Research

Tens of millions of dollars have been generously donated to help find a cure for ALS through the Ice Bucket Challenge. The challenge was started by Pete Frates and Pat Quinn to raise awareness and funding for ALS research. The phenomenon that has transpired is well documented.

The dollars were given at first by people who know Pete and Pat, followed by those who know some one, like me, diagnosed with Lou Gehrig's Disease, or in memory of a loved one who died of ALS.  I am also certain, donors expected that the money would go for research to find real treatments and a cure, for a disease has has neither.  

ALSA Leadership Moving Slowly on Funding 

ALS Association

In recent articles, (Fortune.com) and interviews (PBS NewsHour), the leadership of ALSA have made it clear that their organization's mission includes other matters such as advocacy and patient support, and that they will take time to ensure the dollars are spent wisely. While I agree with the "spend wisely" part, I find some problems with their position. One, as I indicated, is that people donated, primarily, to have funds go to find a cure. They did so, often, in the name of someone afflicted witht he disease. ALSA was merely the conveneint vessel to deposit the funds.  Secondly, If we add ALSA's own numbers for the portion of their budget that goes to research (27%) to that for patient services, the amount of dollars that touch people with ALS is below 50%.

The ALSA leadership has also said that they do not think providing funds quickly to research organizations is good, as those organizations will not be ready to handle it. This point of view is, at best paternalistic, and, at worst, insulting. Research entities, such at the ALS Therapy Development Institute in Cambridge, MASS are thirsty for money. ALS-TDI, a non-profit biotech which shares its findings and cooperates with leading hospitals, clinics and pharamceutical companies, can certainly use the money immediately to expand their work, such as the cutting-edge iPS program just launched. ALS-TDI uses 87% of money received for research programs. (Full disclosure: I have volunteered for participation in tis program and am awaiting a decision by TDI.)

WWW.ALS.NET

While the ALSA board decides how to use the money that fell to them like manna from Heaven, thousands of people living with ALS will worsen and die. This is hardly good stewardship of the funds generously contributed.

Ice Bucket Challenge to ALSA Board of Directors

At a large ALS Ice Bucket Challenge organized by Augie's Quest in California, dozens of people, including Augie Nieto and I took a rather frigid shower. So did a ten year old by the name of Dominic Cumo who has been living with ALS since he was two. (You can get to know this terrific, brave kid through https://www.facebook.com/DominicTheDominatorCumo.) At that time, I challenged the Board of Directors of the ALS Association to release funds for research IMMEDIATELY, and in sufficient amounts to make a difference, to leading research intitutes. The charter of the organization should include its own demise. That is, put itself out of business by investing as much as it can in treatment and cure. 

I would like to see a solution for ALS in our lifetimes - the lifetimes of those living with ALS. People like Augie and Dominic. Sadly, in many cases, that is a very short time. Please contact ALSA (www.als.org) and ask them to release for research the dollars you gave IMMEDIATELY.

Posted in Overcoming Adversity.

Aug 25, 2014 Arrow1 Down Reply
Melissa Irvine

The ALSA SHOULD DONATE THE SEVENTY MILLION DOLLARS TO ALSTDI FOR RESEARCH - The rest can go to families with ALS to get what they need when they need it, then whatever comes next so long as the ALSA can continue to fundraise on their own behalf to offer the services they provide.

Aug 25, 2014 Arrow1 Down Reply
MEWoodman

Click on the link below, scroll to page 15 from 2013 ALSA annual report and where it shows the consolidated/combined revenue and expenses of ALSA National and the chapters. Each chapter and National report through their own 990 to the IRS each year. An accurate picture of all the monies into and out of ALSA need to be the combined/consolidated view to know the reality of how little goes to research and how much is spent on fundraising. Don't anyone be fooled by only looking at an ALSA chapter numbers or ALSA National numbers on their own. It skews the data even though much effort is done to paint a glorious picture. This status quo for ALS over decades has to stop. Look what 3 ALS community members did with an Ice Bucket and no overhead fundraising costs required by any non-profit to execute this massive ALS Awareness movement. An ALS patient wife dumps a bucket of ice, posts on Facebook. An ALS patient sees it and share with his friend, another ALS patient .... And the rest is history!! Imagine what ALSA fundraising expenses will reflect because of the ALS IBC when it was not even them who started it. They're taking credit for it and their fundraising expenses will reflect that, too!!

The 2013 ALSA annual report shows $64 million revenue, only $6.6 million went to research, and over $9 million to cover fundraising costs. What is wrong with this picture??? And equipment in Patient services/programs? It's donated from other ALS families who no longer need. ALSA is not running out buying new equipment for patients!!

The 2014 numbers currently reported on ALSA.org website are only ALSA National. Each chapter pays a % of their revenue into National. Just like a franchise business!

Also note that ALSA fiscal year ends January 31 each year.

http://web.alsa.org/site/DocServer/annual_report_fye2013.pdf?docID=107222.

Walkers beware!!! Only walk if you can designate which ALS Research facility is to receive your donated dollars and which chapter is to receive for patient services. Or, better yet, some other ALS non-profit. Stop the status quo by stopping the financial flow into the salaries. Walk with purpose to end the status quo. Walk to #EndALS and designate your research lab to receive the monies. Be an ALS Game Changer. Donate with purpose: www.als.net/donate where 87cents of each dollar goes to research. ALSTDI - the world's largest ALS research lab dedicate to ALS whose history is rooted from an ALS patient and family (The Heywood's) fight and commitment to for #EndALS.

Note: this same comment was posted in ALSA Nat'l FB page in comment to their over $70 million raised post. They chose to delete it as they have done other comments posted by members of the ALS Community. Pretty sad for a professed ALS Advocacy Organization not able to handle differing opinions or controversy.

Aug 25, 2014 Arrow1 Down Reply
Vicki McMeans

ALSA Board of Directors...you have received a windfall from the ALS Ice Bucket Challenge. Money you didn't fundraise for and money you never expected. That money was donated for research to find treatments and a cure for ALS. It was not meant for other things ALSA does. It certainly wasn't meant to pay salaries, send your people to convention, or for marketing! You were an easy vessel for people to donate to, so they did. They expect their money to go to research!!! You dragging your feet trying to decide how you are going to use this windfall is just wrong, both morally and ethically wrong. Put it into research NOW. Give it to ALSTDI Immediately.
Tens of millions of dollars have been generously donated to help find a cure for ALS through the Ice Bucket Challenge. The challenge was started by Pete Frates and Pat Quinn to raise awareness and funding for ALS research. The phenomenon that has transpired is well documented.

The dollars were given at first by people who know Pete and Pat, followed by those who know some one diagnosed with Lou Gehrig's Disease, or in memory of a loved one who died of ALS. Donors expected that the money would go for research to find real treatments and a cure, for a disease that has neither. Just listen to the people doing the challenge. They are doing it to find a cure!!! Please do what you are actually obligated to do and get this money put into research immediately. Every day that you wait another 16 Pals die! ALSTDI is moving forward with research, give the money to them to speed up the research and find a treatment and cure faster. Put the money where it belongs and put that 70 million dollars to work in research where the donors intended it to be.

I personally can not believe you are dragging your feet on this. I can guarantee you that I intended my donation to go to research and not to anything else. If I had known how you were going to stall around with the money I certainly would have told everyone I could not to donate through ALSA. I would have put huge posts all over FB to let people know that money donated through you would not get to the place they intended it to go. Do your own fundraisers for the other things you do. This fundraiser was intended for RESEARCH!!

I trust you to do the right thing and put the money into research for a treatment and a cure for ALS. Anything else is a breech of trust and a misuse of funds.

Trusting you to do the right thing.

Aug 25, 2014 Arrow1 Down Reply
Vicki McMeans

ALSA Board of Directors...you have received a windfall from the ALS Ice Bucket Challenge. Money you didn't fundraise for and money you never expected. That money was donated for research to find treatments and a cure for ALS. It was not meant for other things ALSA does. It certainly wasn't meant to pay salaries, send your people to convention, or for marketing! You were an easy vessel for people to donate to, so they did. They expect their money to go to research!!! You dragging your feet trying to decide how you are going to use this windfall is just wrong, both morally and ethically wrong. Put it into research NOW. Give it to ALSTDI Immediately.
Tens of millions of dollars have been generously donated to help find a cure for ALS through the Ice Bucket Challenge. The challenge was started by Pete Frates and Pat Quinn to raise awareness and funding for ALS research. The phenomenon that has transpired is well documented.

The dollars were given at first by people who know Pete and Pat, followed by those who know some one diagnosed with Lou Gehrig's Disease, or in memory of a loved one who died of ALS. Donors expected that the money would go for research to find real treatments and a cure, for a disease that has neither. Just listen to the people doing the challenge. They are doing it to find a cure!!! Please do what you are actually obligated to do and get this money put into research immediately. Every day that you wait another 16 Pals die! ALSTDI is moving forward with research, give the money to them to speed up the research and find a treatment and cure faster. Put the money where it belongs and put that 70 million dollars to work in research where the donors intended it to be.

I personally can not believe you are dragging your feet on this. I can guarantee you that I intended my donation to go to research and not to anything else. If I had known how you were going to stall around with the money I certainly would have told everyone I could not to donate through ALSA. I would have put huge posts all over FB to let people know that money donated through you would not get to the place they intended it to go. Do your own fundraisers for the other things you do. This fundraiser was intended for RESEARCH!!

I trust you to do the right thing and put the money into research for a treatment and a cure for ALS. Anything else is a breech of trust and a misuse of funds.

Trusting you to do the right thing.

Aug 25, 2014 Arrow1 Down Reply
Andrea Lazorik

To the ALS Association,
My father, other pALS, and cALS have suffered, suffered, SUFFERED long enough. Transfer the funds to ALS TDI immediately for research. You "earn" salaries? I don't earn a salary caring for my father and managing his care. My father is using all of his hard-earned retirement money to stay alive. Please quickly give the money to researchers and give your salaries to research too!

Aug 25, 2014 Arrow1 Down Reply
TW

Tell friends to only donate to TDI until ALSA tells the public where the 70M is going. And if you donated already, before they added the research option, email/call and tell them you want it to go to research. ALSA could use this windfall to show they are serious about a cure and partner with research facilities. And considering Pete Frates and Patrick Quinn started this, supporting their organizations with 1M each would show gratitude not greed. I hope they do the right thing.

Aug 26, 2014 Arrow1 Down Reply
GC

Motor Neuron Diseases are affecting more and more people in the US and the world: ALS is only one of many such conditions yet the ALS research may lead to cures for some of the others (HSP, PLS, etc.). All of us are awaiting a cure. It is not just the ALS community who is relying on this research. Please use the Ice Bucket Challenge funds to continue the research programs, starting this year and continuing until they are gone! This money needs to be used to be effective!

Feb 27, 2015 Arrow1 Down Reply
anthonio

I am from USA, I want to testify of how i was completely cured from ALS, I was diagnosed in 2007, I have tried all my possible best to get cured from this disease but all proved abortive until i saw a post in a health forum about a herbal healing spell caster who casts herbal spells to cure all kind of diseases including ALS, HIV, Herpes, Cancer etc at first i doubted if it was real but decided to give it a try, when i contacted this great herbal spell caster via his email, he prepared an ALS herbal cure portion and sent it to me through the courier service, when i recieved it i used the herbal portion under his directives and i was totally cured from ALS, Contact this great herbal spell caster via his email Goodluck

Apr 30, 2015 Arrow1 Down Reply
happiness

i want to thank Dr Kingolutar for the herbal HIV medicine he gave to me and my daughter, i was suffering from HIV when i gave birth to my daughter and that was how my daughter got the sickness indirect from me, but to God be the glory that i am heal with the herbal medicine that DR Kingolutar gave to me when i contacted him. i want to use this medium to tell everyone that the solution to our sickness has come, so i will like you to contact this great healer on his email address: [email protected] with him all your pains will be gone, i am really happy today that i and my daughter are cured of HIV, we are now negative after the use of his medicine,my doctor confirm it. once more i say a big thank to you Dr kingolutar for healing hands upon my life and my daughter, i say may God continue to bless you abundantly and give you more power to keep helping those that want your help in their lives. email him now he is waiting to receive you. :[email protected] Or contact his number:+2347059084158

May 18, 2015 Arrow1 Down Reply
Andrew Parker

My names are Andrew Parker ...ALS has been ongoing in my family for long..I lost
both parents to ALS and it is so much pain have not been able to get over. As we all know medically,there
is no solution or cure for ALS and the cost for Medication is very expensive..Someone introduced me to a Harbal
man email:(Native Medical Practitioner)in oxford.. I showed the man all
my Tests and Results and i told him have already diagnosed with ALS and have spent thousands of dollars
on medication..I said i will like to try him cos someone introduced me to him..He asked me sorts of
questions and i answered him correctly..To cut the story short,He gave me some medicinal soaps and some
herbs(have forgot the name he called them) and he thought me how am gonna use them all..At first i was
skeptical but i just gave it a try..I was on his Medication for 2 weeks and i used all the soaps and
herbs according to his prescription.. that he will finish the rest himself..and i called him 3 days
after, i arrived and i told him what is the next thing..he said,he has been expecting
my call.. he told me to visit my doctor for another test..Honestly speaking,i never believe all
he was saying until
after the test when my doctor mention the statement that am, also negative and the doctor started
asking me how do i get cure....Am telling this story to every one of you encase you also having
same problem you can contact him on his via email address:
Kind Regards!
Thanks...

Jun 15, 2015 Arrow1 Down Reply
richards

My names is Richards Stone ALS has been ongoing in my family for long..I lost both parents to ALS and it is so much pain that i have not been able to get over. As we all know medically,there is no solution or cure for ALS and the cost for Medication is very expensive..Someone introduced me to a Herbal man email(Native Medical Practitioner)in AFRICA.. I showed the man all my Tests and Results and i told him i have already diagnosed with ALS and have spent thousands of dollars on medication..I said i will like to try him because someone introduced him to me..He asked me sorts of questions and i answered him correctly..To cut the story short,He gave me some medicinal soaps and some herbs(have forgot the name he called them) and he thought me how am gonna use them all..At first i was skeptical but i just gave it a try..I was on his Medication for 2 weeks and i used all the soaps and herbs according to his prescription.. that he will finish the rest himself..and i called him 3 days after, i arrived and i told him what is the next thing..he said,he has been expecting my call.. he told me to visit my doctor for another test..Honestly speaking,i never believe all he was saying until after the test when my doctor mention the statement that i am also negative and the doctor started asking me how do i get cure.Am telling this story to everyone of you incase you are may need his help.
Kind Regards!
Thanks

Jun 17, 2015 Arrow1 Down Reply
DAVID WATER

(MUST READ: HOW I GOT CURED FROM ALS DISEASE)
I am from U.S.A, I was diagnosed of ALS disease (Lou Gehrigs disease) in 2012 and I have tried all I can to get cured but all to no avail, my life was gradually coming to an end, until i saw a post in a health forum about a herbal doctor from Africa who prepares herbal cure to cure HIV/ and all kind of diseases including ALS, MND, Epilepsy, Leukemia, Asthma, Cancer, Gonorrhea etc, at first i doubted if it was real but decided to give it a try, when i contact this herbal doctor via his email, he prepared an ALS herbal portion and sent it to me via courier service, when i received this herbal portion, he gave me step by step instructions on how to apply it, when i applied it as instructed, i was cured of this deadly disease within 7 days, I could not walk or talk understandably before but after i took the herbal cure as he instructed i regained strength in my bones and i could talk properly unlike before, I am now free from the deadly disease, all thanks to Dr CHIWAKA.

Jan 16, 2016 Arrow1 Down Reply
harmony

@Melissa I(A MUST READ: HOW I GOT CURED FROM ALS DISEASE)
I am from Philadelphia, I was diagnosed of ALS disease (Lou Gehrigs disease) in 2012 and I have tried all I can to get cured but all to no avail, my life was gradually coming to an end, until i saw a post in a health forum about a herbal doctor from Africa who prepares herbal cure to cure all kind of diseases including ALS,/ MND, Epilepsy, Leukemia, Asthma, Cancer, Ghonorhea etc, at first i doubted if it was real but decided to give it a try, when i contact this herbal doctor via his email, he prepared an ALS herbal portion and sent it to me via courier service, when i received this herbal portion, he gave me step by step instructions on how to apply it, when i applied it as instructed, i was cured of this deadly disease within 7 days, I could not walk or talk understandably before but after i took the herbal cure as he instructed i regained strength in my bones and i could talk properly unlike before, I am now free from the deadly disease, all thanks to Dr. Contact this great herbal doctor via his email [email protected] or [email protected] or do [email protected] rvine:

Jan 21, 2016 Arrow1 Down Reply
soft

I cant believe this, A great testimony that i must share to all ALS/MND patient in the world i never believed that their could be any
complete cure for ALS/MND or any cure for ALS,i saw peoples testimony on
blog sites of how Dr. UDU prepare herbal cure and brought them back to
life again. i had to try it too and you can,t believe that in just few
weeks i started using it all my disease stop gradually and i had to leave
without the drugs the doctor gave to me. Right now i can tell you that few
months now i have not had any disease,delay in treatment leads to death. Here
is his email: [email protected] or [email protected] [email protected] and he can as well cure other diseases such as

anemia
herpes
hepatitis b
diarrhea
STD
heart disease
diabetes
Ect.

Jan 21, 2016 Arrow1 Down Reply
soft

I cant believe this, A great testimony that i must share to all ALS/MND patient in the world i never believed that their could be any
complete cure for ALS/MND or any cure for ALS,i saw peoples testimony on
blog sites of how Dr. UDU prepare herbal cure and brought them back to
life again. i had to try it too and you can,t believe that in just few
weeks i started using it all my disease stop gradually and i had to leave
without the drugs the doctor gave to me. Right now i can tell you that few
months now i have not had any disease,delay in treatment leads to death. Here
is his email: [email protected] or [email protected] [email protected] and he can as well cure other diseases such as

anemia
herpes
hepatitis b
diarrhea
STD
heart disease
diabetes
Ect.