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ZenArcher

Senior member
Joined
Feb 22, 2007
Messages
676
Reason
PALS
Diagnosis
02/2007
Country
US
State
PA
City
McEwensville
I have to ask forgiveness up front because this post may become somewhat vocal. I read an article today online that well frankly pissed me off. I've since tried to move one but the more I think about it the angrier I get.

The article I'm referring to was in the Washington Post and is titled U.S. to Grant $1 Billion Aid Package to Georgia. I won't get into whether or not the U.S. should aid Georgia but what I will get into is a couple of things this brought to light.

As most of you know our friend from Oklahoma put a hold on the ALS Registry S. 1382 because of the $75 million over 5 years that would increase our deficit even more. Keeping that in mind have a look at this little tidbit:

Secretary of State Condoleezza Rice, who announced the aid package today at the State Department, said it would be divided into two phases, beginning with $570 million in funds taken from fiscal 2008 and 2009 budgets.

I will freely admit that foreign affairs is not my strong suit but I'm fairly good at math. Unless my calculator lies we could fully fund 7 registries and still have money left over and that's paying everything up front. Someone please explain to me why we can send all this money to a country that picked a fight with a much bigger opponent and got their a$$ kicked for it but we can't fund a registry that may help people around the world. Explain to me why we as a people haven't gone to D.C. and stuck our boots so far up the Senate's backside that they'll taste shoe leather for years. Explain to me why we can spend over $20 million trying their &%$#(^$ soldiers but we can't fund the registry.

The provision of $1 billion of U.S. aid -- some of which must be approved by Congress -- will exponentially increase the level of assistance to Georgia, which totaled about $64 million in fiscal 2008. About a third of that money was spent on training and equipping the Georgian military to meet NATO standards and allow Georgian troops to continue participating in the U.S.-led international coalition force in Iraq.

I understand the differences between Democrats and Republicans. I understand the virtues of opposing points of view. I can even understand why that a$$hole from Oklahoma wants to cut spending. What I can't understand is why we stop spending that will help people worldwide and then help a select group. I don't understand why party politics and the price of gas outweigh human lives. I don't understand why every PALS, CALS, friend, family member and advocate isn't screaming so loud that their Senators can't help but listen. You mean to tell me that in the eyes of my own government the economic well being of the people of Georgia outweighs the lives of not only our own veterans and citizens but of people around the world that could benefit from this information. $75 million over 5 years for the Registry or $570 million out of the budget to help Georgia. I just don't get it.
 
Why can we spend all this money to help Georgia & not our (& ultimately the world's) Pals & Cals? Not to mention all the children that go to bed hungry EVERY night, and the children who don't have basic health care or a decent roof over their heads? The fact that this happens in The US is inexcusable. Why does it happen? Apparently we have not yet spent enough money aiding or fighting in foreign countries! Don't get me going on this, Jeff!

In defense of our Pals & Cals, I think alot of them have not been screaming loud & long simply because we are exhausted from the disease, from caretaking, from fighting insurance companies and just from having to fight for any help at all sometimes. I have written to my senators, but I know that I too, could be doing more. If someone could add a few hours to my day, that would be great.
I could go on & on, but I had better shut up before I get banned from the forum. This site has helped me tremendously!
 
Unfortunately in the eyes of the government they rather have a stronghold on another country, especially one so close to the middle east than do the right thing for U.S. citizens. They dont care about the people they care about the power, they use the people as a ploy. To them we have no use as we have nothing to offer in their eyes. The world is a dog eat dog world and the worse i got the more i learned that. Reading about foundations like MDA and online sites like this make it a little easier place to live. You are right, nothing will change in government unless the people make it, that is how most charities and organizations get started, not by the government but by people who care about other people.
 
I don't understand why party politics and the price of gas outweigh human lives. I don't understand why every PALS, CALS, friend, family member and advocate isn't screaming so loud that their Senators can't help but listen.

YES! It's going to take angry people.

I'm not talking politics, I'm just talking about logistics ... but MoveOn.org proved that a few angry people + the Internet can move mountains. Or at least, they can rearrange some pretty big foothills. So maybe it's up to us to start the screaming! We need a focus and a goal ...

I think publicity is one option. The #1 question is, How can we get past the jerk from Oklahoma? How can we generate news about what he's doing and the people who have already died because of him ... and who are dying right now because of him?

Maybe we could nominate him for the "Worst Person in the World" on MSNBC's "Countdown." We have to start somewhere.

And since ALS affects vets disproportionally, could some vet organizations start to raise their voices, too? (Michael Moore is probably too much to hope for.)

I'm willing to scream if anybody else is.

BethU
 
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Beth,

I will certainly join you in screaming! I know it is only a drop in the bucket, but I talked to a local physician today, who is also running for state representative, and he donated $1000 to our Southern Indiana ALS walk. I have a meeting with him next week for the class I'm taking, someone on here let me know what to bring up please!

Like I said, I'll do my part in the screaming
Never give up,
Never let up,
Never lose faith,
brenda
 
Nice use of military phonetics, Jeff!

What burns me is thinking about how much of that $570 million is going to be gobbled up by corrupt Georgian officials through fraud, waste and abuse and not go towards its intended purposes anyhow.

I think its stupid, too.

Zaphoon
 
I cornered Senator Obama and I am not backing down

I used to be a sweet southern belle, but now that my husband of forty years has ALS, I have become a steel magnolia.

At a recent campaign town forum appearance in our town, I went and confronted Senator Obama and caught him off guard when I asked why his staff told the ALS delegation to Washington in May of 2008 that he would not support the ALS registry bill "because he had not written it."

He was taken aback and immediately stated that he could not see why "anyone would not support a bill to help find a treatment or cure for this devastating illness. He has a relative with MS, he said, and so on and so on. He also had them take my name and said he would follow up with his staff.

I am not holding my breath, but neither am I sitting idly by. I continue to write and call the Senator's office to ask, "Well?"

I wouldn't wish this illness on an Adolph Hitler (well, maybe) but I sure wouldn't mind if our friend in Oklahoma had a taste of what it is like!
 
Below is my letter to Senator Specter. I sent this about an hour before I read about the $1 billion in aid to Georgia so he will be getting another one shortly. I post it here so others can edit and use as they wish.

I watched CSPAN with great disappointment on July 28th as the ALS Registry was once again brushed by the wayside for no reason other than partisan games. I watched as nothing was accomplished except finger pointing and political posturing. I watched as the denial of cloture was explained away by the desire to pass the much needed energy bill. I then followed during the last week prior to the recess where again nothing was accomplished. Over a month later the ALS Registry still sits in the Senate as valuable time and information is lost forever.

I was diagnosed with ALS at the age of 38. Two years later I am lucky enough to still be able to walk and work to support my wife and two teenage daughters. I have devoted much of my time trying to help myself and other veterans with ALS become service connected. I have spoken with, met and seen many people with ALS, their caregivers and their families who dedicate a good portion of their precious time working to help others. I then watch our elected officials bicker and point fingers like school children instead of serve those who put them in office. I listen as your colleague Senator Coburn suggests that the government be run like a household. I then think of what families will endure to ensure that a loved one is cared for. I then watched as you explained quite nicely how Senator Reid was guilty of “filling the tree”. My question is how that relates to any of the bills contained in S. 3297 and even more specifically to S. 1382 The ALS Registry?

ALS could care less about party lines. It kills without concern for political affiliation or social standing. For almost 140 years it has relentlessly marched on while the medical profession has tried to find a way to even slow the progression with no success. Approximately every 90 minutes another individual loses their battle with ALS. What saddens me even more is that someone else is diagnosed with ALS slightly more often. Statistics show that the number of cases of ALS are increasing and have been for quite some time.

I would have liked to ask this question face to face however the town hall meetings were all over two hours away and to my knowledge your staff would not commit to a meeting with the ALS Association. As such I will ask my question here. Given the fact that you not only voted against S. 3297 but then actively participated in the political rhetoric which followed, what will you do to help ensure some semblance of hope for the estimated 1200 – 1500 Pennsylvanians diagnosed with ALS which resides in the establishment of the ALS Registry (S. 1382)? As an individual once misdiagnosed with ALS I would think that the ALS community would have your support and yet your name is on the short list of 23 which have not cosponsored S. 1382.

As veterans we have been failed by the VA as service connection is an uphill battle most often lost. As patients we have been failed by the medical community because after almost 140 years there is no effective treatment although they are trying. As citizens we have been failed by your government because party politics, posturing and the upcoming election have taken precedence over the doing one’s job and concern for human life.
 
[QUOTE=Charlotte Feldman;53120]IAt a recent campaign town forum appearance in our town, I went and confronted Senator Obama and caught him off guard when I asked why his staff told the ALS delegation to Washington in May of 2008 that he would not support the ALS registry bill "because he had not written it."
He was taken aback and immediately stated that he could not see why "anyone would not support a bill to help find a treatment or cure for this devastating illness. He has a relative with MS, he said, and so on and so on. He also had them take my name and said he would follow up with his staff.[/QUOTE]


Wow, good for you! I just posted a message elsewhere about Obama mentioning "finding a cure for Lou Gehrig's Disease" in his recent debate with McCain. I bet you were the inspiration for that!

Every mention of this disease has an impact on someone. It is like throwing a stone into a pond ... the information ripples outward.

BethU

Act as if what you do makes a difference. It does.
-- William James
 
Coburn

Below is my letter to Senator Specter. I sent this about an hour before I read about the $1 billion in aid to Georgia so he will be getting another one shortly. I post it here so others can edit and use as they wish.

Jeff, what organization will be responsible for compiling the registry should this bill ever pass? (Which we all know won't happen till Coburn retires in 2016.)

Reading Coburn's webpage, he seems to give explicit instructions on how to get money for specific medical program.

The website reads:

In a letter to his Senate colleagues, Dr. Coburn urged senators to put patients' care above politics when it comes to funding for the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) and disease-specific legislation. (Doburn's letter to Congress says): Congress has an important role in the war on disease. We must hold the agencies’ feet to the fire and ensure they are meeting their mission of reducing the morbidity and mortality rates for the diseases that kill Americans and others.

Then he says: The American people who struggle against disease, however, do not want Congress micromanaging scientific priorities and promise, including mandating exactly how much NIH or CDC spend on a particular disease, body part, or research project. (Wonder how many Americans struggling against disease told him that?)

SO, OK ... he says he wants to lavish money on CDC and NIH so that they can keep Americans (and others -- that's big of him) alive. And he doesn't want Congress telling either of these two organizations what diseases they should be researching.

So, wouldn't it be worth a try to lobby the CDC and NIH, instead of politicians ... if this gets put on their budget, then from what Coburn says, it sounds like he would be delighted to shovel piles of money their way for this research, because heaven forbid, he should micromanage what kind of research they do.

BethU

I'm quoting the following from his website just for the the irony:
During his tenure in the House, Dr. Coburn wrote a law intended to prevent baby AIDS.
Funny, that sounds mighty disease-specific to me.


And I don't get that bit I highlighted in red about making sure there's $$ for disease-specific legislation. Isn't that what he's fighting?
 
The CDC will be responsible for the registry with assistance from the National Institute of Health (NIH) and the VA. Below is a summary of the bill as it is found on the Library of Congress:

ALS Registry Act - (Sec. 2) Amends the Public Health Service Act to require the Secretary of Health and Human Services, acting through the Director of the Centers for Disease Control and Prevention (CDC), to: (1) develop a system to collect data on amyotrophic lateral sclerosis (ALS) and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, or progress to ALS; and (2) establish a national registry for the collection and storage of such data to develop a population-based registry of cases.

Requires the Secretary, acting through the Director, to establish the Advisory Committee on the National ALS Registry to review information and make recommendations to the Secretary concerning: (1) the development and maintenance of the registry; (2) the type of information to be included; (3) the manner in which data is to be collected; (4) the use and availability of such data; and (5) the collection of information about diseases and disorders that primarily affect motor neurons that are considered essential to furthering the study and cure of ALS. Sets forth reporting requirements.

Allows the Secretary, acting through the Director, to award grants to, and enter into contracts and cooperative agreements with, public or private nonprofit entities for the collection, analysis, and reporting of data on ALS and other motor neuron disorders.

Requires the Secretary, acting through the Director, to: (1) identify, build upon, expand, and coordinate among existing data and surveillance systems, surveys, registries, and other federal public health and environmental infrastructure wherever possible; and (2) provide for research access to ALS data as recommended by the Advisory Committee in a manner that protects personal privacy.

Requires the Secretary to ensure that epidemiological and other types of information is made available to the National Institutes of Health (NIH) and the Department of Veterans Affairs (VA).

Authorizes appropriations for FY2008-FY2012.

(Sec. 3) Requires the Secretary to report to the appropriate congressional committees on ALS registries, including: (1) the registries currently under way and future planned registries; (2) the criteria involved in determining what registries to conduct, defer, or suspend; (3) the scope of those registries; and (4) the activities the Secretary undertakes to establish partnerships with research and patient advocacy communities to expand registries.

That idiot from Oklahoma is nothing more than a narcissist with delusions of grandeur. He says a lot of things but let me give you some facts he doesn't advertise on his homepage. He is a member of the Health, Educations, Labor and Pensions (HELP)subcommittee. The ALS Registry was referred to the HELP subcommittee on 5/14/2007. The HELP subcommittee made a small amendment and released the bill to the Senate floor on 12/4/2007. Now I have spoken with people who spoke at many of the meetings of the HELP subcommittee. They answered all questions asked and attempted to make sure Dr. No was satisfied. He had several opportunities to ask for amendments or voice concerns and did not. The when the bill hits the floor and he has a chance at making the news he shoots his mouth off. He is no more than a waste of human flesh.

Now in terms of getting it past him that's simple. If we get S. 1382 to the floor for a vote we have 77 cosponsors. In one vote they can invoke cloture which means idiot can't fillibuster. Then within a week they can call for a vote and pass the bill. All we have to do is convince our senators to approach Senator Reid the Majority Leader to bring it to the floor for a vote and then we can spit in idiot's eye as we go past.

Simply talking about that man makes me mad enough to chew nails. Beth I don't mean this against you in anyway but I don't care what he has to say. In my eyes he is nothing more than something to avoid stepping in as we walk the Registry through. He is beneath my time and effort and as such I will focus my efforts elsewhere.
 
In my eyes he is nothing more than something to avoid stepping in as we walk the Registry through. He is beneath my time and effort and as such I will focus my efforts elsewhere.

I get your point and will back off from this, as you obviously have the battle well in hand. I was just trying to think of ways around him.

BethU
 
I found this while looking for something else but the timing is perfect. I was looking through the bills that have been passed thus far by the 110th Congress. There aren't that many so it isn't difficult. Anyway I happen across this bill which is now law H.R. 5501 Tom Lantos and Henry J. Hyde United States Global Leadership Against HIV/AIDS, Tuberculosis, and Malaria Reauthorization Act of 2008. The summary of the bill states:
To authorize appropriations for fiscal years 2009 through 2013 to provide assistance to foreign countries to combat HIV/AIDS, tuberculosis, and malaria, and for other purposes.
Now to me that is disease specific legislation and I'll give you three guesses as to which idiot voted Aye. I guess disease specific legislation is only okay if we're giving our money to other countries.
 
Hey Jeff, Did you get a response?

Was wondering if you received a response from Senator Specter, in regards to your letter you referenced in your post #8. I know alot of good things have happened with the passing of the registry and service connection for all Veterans, but I was just curious if you received a response.

Take care!
 
I didn't receive a response until after it was passed and the response was a blanket one with the date the registry was passed thrown in. Of course the email speaks as though he was instrumental in passing the bill which he wasn't. Oh well, for now it's passed and he's not up for re-election this year but I do have a good memory :twisted:
 
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