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indigosd

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Lost a loved one
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I thought that it would be interesting and enlightening to post links to the Government required Financial Disclosures of the Organizations that are in existence and granted Nonprofit status due to their mission statement of assistance to PALS. I think that this would be very beneficial to the PALS and the CALS so that we can see who it is that is REALLY helping us and who is just making a lot of money off of ALS. You may decide that there are some organizations that you will not endorse nor will you personally raise any more capital for them. I hope that others will research and post other Financial Disclosures.

I would suggest that you pay attention to the salaries of the CEO's, top 5 paid employees, benefits, assets, do they own stock, do they do political lobbying and are they doing business with one another ie board members or family members-who is on the board? What have they done for PALS or CALS ...look at them closely and see if they are worth your time and your money. Case in point, I use to be very active in the Relay for Life for the American Cancer Society until I researched the above and realized that I was just assisting a LOT of people make a very good living.

I am going to start with this link. It is 35 pages long but well worth your time to read.

http://www.als.net/docs/pdf/AnnualReports/ALSTDI_2008_Form_990_Open_to_Public_Inspection.pdf

These are some the areas that made me want more information.
Gross income for 2008 pg 1 line G 12,753,489.00
Current year Contributions/Grants 10,863,117.00 [from who?]
Pg 4 Part iv line 28 really look at this
Pg 7 Part Vii Compensation of Officers, Directors etc..
Husband and a wife! Sean Scott President and Nancy Scott Director of Business Dev Making a combined income of $427,452.00 for the year
Maureen Lister Treasurer, Sect $236,773.00 for the year
Kim Sciascia Asst Clerk $109,163.00
Steven Perrin Chief Science Officer $342,518.00 for the year
If you go to page 26 you can see the breakdown and how much was tax deferred
I would like to know what kind of degrees are held by these individuals. I would like to know exactly what research has been done and if they have made any major break throughs since they incorporated in 1999. I would like some accountability since they are lobbying for funds and receiving charitable contributions but not showing that they gave any of their millions to charity. I REALLY WISH one of our forum family who has a background in taxes and bookkeeping would look at this and explain it to me. :)
 
Re: Financial Disclosures

Good for you for doing the homework and posting the facts. It is true that most of these organizations must make the information public by law, but most of the time we simply do not get to the boring logistics called financials.
I have my beliefs about what is exhorbitant and what is a reasonable income for a not-for-profit, and it is hard to reason with $300,000 +, regardless of skillset.
 
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That is freakin obscene.

AL
 
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That is absolutely SICK.
Now I know why I stopped frequenting their website several years ago.
 
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not for profit - road apples (notice I didnt say horseshit)

lets report them to the IRS - get them audited.
 
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Oh...but it gets even BETTER! Read this link Sean F. Scott - Wikipedia, the free encyclopedia
and then note the first line "Sean Forrester Scott (May 20, 1969 – February 9, 2009) was a self-educated American disease activist and researcher, filmmaker, innovator, entrepreneur[1] and until the time of his death[2], the President of the ALS Therapy Development Institute, the world's largest amyotrophic lateral sclerosis (ALS/Lou Gehrig’s disease) research center. Scott himself was diagnosed with ALS in 2008 at the age of 38." and the last line "Scott earned an undergraduate degree in rhetoric from the University of California, Berkeley." I guess that a undergraduate degree in RHETORIC qualifies a thirty year old to write scientific abstracts, get funds for millions of dollars and have a individual income of $238,645.00. I wonder how he worked the 40 hours a week in 2008 with ALS and he died in Feb of 2009....hmmmmm Off to see what I can find out on the rest of them like his wife Nancy Kelly Scott who married him in 2008 and was the DIRECTOR Of Business Development. I wonder what her degree was in? Gee they lived in San Francisco, CA...I thought that I read somewhere that this ALS TI is based in MASSACHUSETS... how do you work 40 hours a week with ALS when you live in California and the headaquarters are in Massachusets? hmmmmm
 
Re: Financial Disclosures

the monkeys are loose :) You go girl!
 
Re: Financial Disclosures

I would like to think that ALSTDI (als.net) is legit but I really don't know. They definitely don't seem to be operating on a shoestring budget, do they.

I believe most of their funding comes from MDA. Much of that is via the "Augies Quest" fundraising organized by Augie Nieto, president of a large fitness equipment company who was diagnosed with ALS several years ago.

I go to an MDA ALS clinic and we have done some fundraising for them, including a big local fundraising effort my wife organized to engage the local athletic community. MDA talks about how much they donate to ALS research but I think a lot of it is through ALSTDI. It is worrisome to think that those funds aren't being used to best effect.

As far as their research, they have been working on directly searching for cures (or treatments) rather than "pure" research which aims at understanding the biology of ALS. They see themselves as more practically oriented. They built up a system to relatively quickly and efficiently test various drugs and compounds to see if they extended the life of ALS mice. The hope was that they could find one or more substances which could at least buy time for PALS. Unfortunately the program has been an almost complete failure. Nothing has worked, the treated mice die just as fast as the controls.

Well this is not quite true, they have found one drug which seemed to help a little. Nothing dramatic but potentially better than Rilutek anyway. I think that was a year ago, maybe 2 years now, but they still haven't made any progress towards testing this drug in humans. It's not something generally available, they would have to get a pharmaceutical company interested and partner with them to make and test the drug. That is a big commitment and so far there has been no (public) progress.

So the bottom line is after all these years and all that money, they have produced nothing to help PALS. Now in fairness, the same could be said about every other form of ALS research over the last decade. But with pure research, the goal is to get more understanding, and there has been some progress there. All ALSTDI has really learned is that they now have a long list of substances that don't cure ALS.

I guess it's like the story of Thomas Edison and the light bulb:

Thomas Edison failed more than 1,000 times when trying to create the light bulb. When asked about it, Edison said, "I have not failed 1,000 times. I have successfully discovered 1,000 ways NOT to make a light bulb."

It's hard to be calm about it when you're the light bulb and you're about to burn out.
 
Re: Financial Disclosures

Hal, I always so treasure your posts. There were many items in that financial disclosure that were moments of hmmmm for me. Did you read the whole thing? There are many ties between the organization, the board, MDA and family members. How is it possible to receive that salary for 40 hours a week when you live in California, have ALS and the headquarters are in Massachussets? How is it possible to write scientific abstracts when your undergrad degree [ONLY EDUCATION] is RHETORIC?! You are so insightful that I hope you will help me understand!
 
Re: Financial Disclosures

This whole grant thing brought to mind a funny (or not so) editorial on the subject of government grants and how stupid they can be. I've posted it below.

Editorial
This page was last updated on January 06, 2009 .

Not Raising Hogs
2/6/03

Dear Secretary of Agriculture:

My friend, Bud, over in Texas, received a check the other day for $1,000 from the government for not raising hogs. So, I want to go into the business of "not raising hogs" myself next year.

What I want to know is, in your opinion, what is the best type of farm not to raise hogs on, and what is the best breed of hogs not to raise? Also, is it possible to get a grazing permit to not raise hogs on public lands (preferably in a wolf or grizzly recovery area so environmentalists will pay me for any not raised hogs lost)? I want to be sure that I approach this endeavor in keeping with all government policies.

I would prefer not to raise Razor hogs, but if that is not a good breed not to raise, then I can just as easily not raise Yorkshires or Durocs. As I see it, the hardest part of this program will be keeping an accurate inventory of how many hogs I haven't raised, but I understand that I will be able to accelerate the depreciation on the computer that I will buy for keeping those records. If I can get $1,000 for not raising 50 hogs, will I get $2,000 for not raising 100 hogs - or are the payments progressive? I plan to operate on a small scale at first, holding myself down to about 4,000 "not raised" hogs, which will give me $80,000 income the first year.

Then I can buy an airplane. Now, another thing... these hogs I will not raise will not eat 100,000 bushels of corn. I understand you also pay farmers for not raising corn and wheat. Will I qualify for payments for not raising wheat and corn not to feed the 4,000 hogs I am not going to raise? As I am not going to use subsidized irrigation water to not water that corn and wheat that I will not be raising to not feed my not raised hogs, will the government pay me the subsidy for the water not used? What about ESA mitigation credits that I could sell to developers for their use in habitat conservation plans and safe harbor agreements?

Also, if I do not raise hogs on public lands, will I still qualify for drought relief payments about 7 out of every 10 years like the folks who raise cows there do? Can I pledge a BLM or Forest Service permit to not raise hogs as security on a loan from my bank, and will my grazing permit be extended for 10 years if I do? How about predator control to protect my not raised hogs, and do you happen to know which states will provide the best animal damage reimbursements and best property tax breaks? Is it true that in the future I will be allowed to lock the gates on public lands to protect the hogs that I am not raising there, and will you provide the locks?

I want to get started not raising hogs as soon as possible, as this seems to be a good time of the year to not raise hogs and grain. I am also considering the "not milking cows" business, so please send me any information on that program as well.

In view of these circumstances, I understand that I will qualify for "earned income" tax credits and the government will also consider me totally unemployed, so I plan to file for unemployment and food stamps as well. Will I also be able to take an oil depletion allowance for the oil and gasoline that I will not be using in the farm equipment that I will not have?

Thank you for making these benefits available to us common folk.
 
Re: Financial Disclosures

Thanks Kim. That is such a parody of how ridulous and sad the whole thing is! Anyone else have any outrage or words of wisdom? Does anyone want to find another financial disclosure and post it so we can see if all of them look like this one?
 
Re: Financial Disclosures

I'll get right on that. :)
 
Re: Financial Disclosures

This is a copy and paste of 01-11-2010 post about Dr. J McCarty who was employed by ALSTDI
Re: New to forum, John McCarty, PhD

--------------------------------------------------------------------------------



As for why I was fired from TDI, I wish I could actually tell you but since there was no logically consistent reason, I myself even don't know why. I can only assume it had to do with 'personalities' – whatever that means – and perhaps where the organization is heading and probably the current funding pinch was a factor. Certainly leaving the non-profit world was not my druthers and, indeed, I can tell you that being suddenly ripped from my caring role in helping people as I had done for four years – much on a very personal level – was traumatic. I have grieved on much in my previous work – more than you can imagine – but the effect of being denied the ability to help surprised even myself.


Sure didn't look like they were in a "funding pinch" to me from that financial disclosure.
Where is the organization heading?
 
Re: Financial Disclosures

WOW! I'm shocked! I'm prayer for a quick and safe return of the monkeys, so that we may understand more......
 
Re: Financial Disclosures

A link to help with your research of nonPROFIT organizations - turned out to be useless (removed) - GuideStar nonprofit reports and Forms 990 for donors, grantmakers and businesses[/url] just found this and haven't looked yet-off to see what is in there :]
 
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