Petition

Iris and tomby,

Back in 2008, the US Congress passed and President Bush signed into law, legislation authorizing the creation of an ALS National Registry, to be administered by the Center for Disease Control. With the change of Administration after the 2008 election and just general bureaucratic inertia, not much progress has been made toward the implementation of the Registry.

Here is the current information on the ALS Registry timeline:

CDC - Amyotrophic Lateral Sclerosis: National ALS Registry Timeline

Thanks Hal, trofogey,
I see from the posted timeline that they are way behind schedule

So does this mean that the CDC is responsible for keeping up the registry list and not the ALSA? Just wondering....

It is a subdivision of the CDC that is responsible for creating and maintaining the registry called ATSDR (Agency for Toxic Substances & Disease Registry). The site is currently online at cdc.gov/als but is waiting on approval from the Office of Management and Budget before opening up online registration.

Per the MDA / CDC conference call on registry status a few weeks ago, the project development itself is on schedule (their original timeline was way longer that I wanted to see, but they say they are meeting that schedule).

but even that is USA, not international
AND WHAT QUESTIONS does this registry ask?

from hals link


The registry will use existing information on people with ALS such as age and race. ALS patients will also be able to register themselves. The registry must be secure and be approved by a number of groups. This is done to make sure the information is kept private and only necessary information is collected. ATSDR is in the process of getting these approvals which can take more than a year. We expect to start registering people in late 2010.

Cant you just see how vague and general it is going to be! -only necessary information!How can you know what is necessary till ,the questions are asked and answered. This is NOT research and we should not lean on it as research. It is what it says - just a registry. Whatwasted opportunity

One way to evaluate a charity is by objective comparisoin to other charities addressing the same cause. The other charity most often referred to on these boards is ALS/TDI:

Key Ratios


Fundraising % of total expenses: ALS/TDI 5.5% ALSA 14.1%
Fundraising Cost per $ raised ALS/TDI $0.05 ALSA $0.16
% spent on services ALS/TDI 86.9% ALSA 70.3%
Excess/Deficit* ALS/TDI +$1.2 mill ALSA -$2.2 million
CEO salary** ALS/TDI $327k ALSA 311K

* ASLA deficit is very large, despite having net assets of $7.9 million. This indicates that money is being spent on overhead and hard assets such as opposed to services. With proper management, liquid assets should be used tp pay off debt and increase patient services.

** DR. PERRIN, CEO ALS/TD,I is world renown as one of the top experts of genomics, proteomics, computational biology, and drug discovery process. He has authored ground breaking papers on "The Genome and Neuro Muscular mapping". As a professor at Boston University, he broke new ground in determining the degeneration patholgy of myelin in MS patients. MARY GILBERT has held numerous executive and staff positions in non profit organizations. Her last position was at The Red Cross. Nothing has been published as relates to any major objective accomplishments nor has her perfomance been notable. Although they have comparable salaries, Dr. Perrin would command far more than Ms. Gilbert on the open market.

I'm not trying to make excuses for ALSA. I'm one of their biggest critics, and I think that they need to deal with their problems and improve the results for their patients; however, in all fairness to their CEO, Jane Gilbert, I thought that a paragraph from their Board Chair's recent posting on Facebook is pertinent --

In addition, The Association’s national office has streamlined its operations, implemented a regional structure in support of chapters and reduced the national staff by more than one third. The senior management staff has not seen an increase in salary in three years, and the most recent 990 reflects the CEO salary from January 31, 2009, which was two months before Jane came on board. Her salary falls below the median point of CEO salaries listed by the National Health Council for non-profit organizations of the size of The ALS Association.

irismarie said:

Cant you just see how vague and general it is going to be! -only necessary information!How can you know what is necessary till ,the questions are asked and answered. This is NOT research and we should not lean on it as research. It is what it says - just a registry. Whatwasted opportunity

Click to expand...

With all due respect, Iris, I haven't heard of a similar initiative in either the EU or any of the member states of the EU. It seems to me that with the pervasive involvement of government in your health care systems, all that's lacking for the creation of a similar registry on your side of the water is the political and bureaucratic will to do it.

Mary Locero said:

One way to evaluate a charity is by objective comparisoin to other charities addressing the same cause. The other charity most often referred to on these boards is ALS/TDI:

Key Ratios


Fundraising % of total expenses: ALS/TDI 5.5% ALSA 14.1%
Fundraising Cost per $ raised ALS/TDI $0.05 ALSA $0.16
% spent on services ALS/TDI 86.9% ALSA 70.3%
Excess/Deficit* ALS/TDI +$1.2 mill ALSA -$2.2 million
CEO salary** ALS/TDI $327k ALSA 311K

* ASLA deficit is very large, despite having net assets of $7.9 million. This indicates that money is being spent on overhead and hard assets such as opposed to services. With proper management, liquid assets should be used tp pay off debt and increase patient services.

** DR. PERRIN, CEO ALS/TD,I is world renown as one of the top experts of genomics, proteomics, computational biology, and drug discovery process. He has authored ground breaking papers on "The Genome and Neuro Muscular mapping". As a professor at Boston University, he broke new ground in determining the degeneration patholgy of myelin in MS patients. MARY GILBERT has held numerous executive and staff positions in non profit organizations. Her last position was at The Red Cross. Nothing has been published as relates to any major objective accomplishments nor has her perfomance been notable. Although they have comparable salaries, Dr. Perrin would command far more than Ms. Gilbert on the open market.

Click to expand...

And you would be comparing an apple to an orange if you did. ALSA National raises and disburses funds for research; it does not conduct research of its own. ALS/TDI is a consumer of research funds given to it by organizations like MDA, whose $7.5 million contribution to ALS/TDI in 2008 comprised between 58 and 66 percent (depending on whether you use Total Receipts or Total Revenue as the bottom part of the fraction) of the take for ALS/TDI that year. That contribution came at no fundraising expense to ALS/TDI and significantly puffs up the bottom part of the fraction for free, making ALS/TDI's fundraising percentage look way better than it really is.

Furthermore, Dr. Perrin's salary in 2008 was associated with his position as chief science officer for the corporation, not as CEO. The late Sean Scott was the CEO of ALS/TDI in 2008, with a specified salary of $238,000. Dr. Perrin was named CEO after Mr. Scott's death last year, and I do not recall any tax filings after that event that would clarify Dr. Perrin's complete responsibilities and his total compensation for those duties.

Hope this helps.

no, I was not criticising AMerica for doing it; Far from it! Just wishing they had made it international. Of course it is easy to say that sitting here in my country village in my wheelchair. France is a pretty crap country apart from its beauty, believe me. (Track system lifts do not exist here!Once yo no longer transfer by foot you are put in nappies and left to fester. Their handicap help is non existent - remember the episode where the éexpert" i had to see was upstairs with no ascenseur? that is typical))

But I want someone somewhere simply to be asking us all questions about our background and then collating the anwsers....
I am OUTSIDE of the ciriticism or praise of ALSA. I knew nothing till you all enlightened me. But I repeat my last sentence. And i do not think it need cost trillions. I bet a committee here could forge the questions , formulated to get answers that can be compared and collated digitally - if only we knew how to get it computerised. Even answers from the thousands affiliated here could surelyhave a chance of throwing up some "coincidence"?

Irismarie, I hear you saying that you are wondering "why" there is not a WORLD wide cooperative effort to find a cause, treatment and cure. Correct? xo

yes . Not necessarily on a govt level. I want there to be a form we all fill in detailing our histories, simply anything that could throw up staistical ly significant similarities somewhere somehow.
all the things ever queried - sport, urban pollution, pesticides and herbicides, bumps on head, unnusually high level of stress, any of the ideas that get offerred from time to time?
Recently there was a thread on people's work in the past. That MIGht have thrown up some staistical conincidence if it were operated in the right way. Then there was talk about bumps on head and so on; But all gone to waste.
Statistics and their analysis are what I call for