Banding Together


I will post exactly what I posted to the Banding Together blog and
hopefully those who have not gotten on the blog will still take the
time to send an email to the four celebrities. Start tonight, but
certainly tomorrow. If for some reason tomorrow slips by, not to
worry, just do it this week.

As my Daddy used to say, "It looks easy but it ain't." And that
explains the methods to reach the four celebrities. Some require you
to use a form on their website and the address below will bring you to
that form. It requires personal information, so each of you will have
to fill them out. I tested it and found that it works fine. I used a
simple cut and past operation. I highlighted the letter I had written
and copied the entire text that I wanted to send. Then in each of the
forms you merely have to paste that text in the appropriate "Subject"
box. It took my entire text with no apparent problem. Using the forms,
it is not possible to send photos. For Ellen, I found an alternate
email address that should allow photos to be attached or included. I
also found two snail mail addresses. Oprah clearly states they do not
accept snail mail. So tomorrow is the day to let your emails fly. I
got acknowledgments from each of them. The bad news is that Montel is
broadcasting his last live show in late September and will go off the
air. They still said my email was being referred to the producers, so
all may no be lost. Good luck my friends and fellow PALS and CALS.

Oprah
http://www.oprah.com/email/reach/email_showideas.jhtml
Larry King Live
http://www.cnn.com/feedback/forms/form5.html?12
Montel Williams
http://www.montelshow.com/mail/
Viewer Services
The Montel Williams Show
433 West 53rd St.
New York, NY 10019
Ellen DeGeneres
http://ellen.warnerbros.com/show/respond/?PlugID=10
http://ellen.warnerbros.com/
The Ellen DeGeneres Show
PO Box 7788
Burbank, CA 91523
Attn: Fan Mail

Gamboachuck aka chuck hummer

1. Is anyone on this board from OK, and are you interested in STARTING a recall campaign?-He's helping ALS kill us faster by preventing a national registry!!

2. Coburn is such an a&&hole, if this disease was contagious I would spit down his throat. I wonder how he would react if he or someone in his family was stricken with ALS. Want to know how I really feel....?

3.
I have also filed a formal complaint regarding him to the Oklahoma State Board of Medical Licensure and Supervision. The hippocratic oath has the physician swear to practice and prescribe to the best of my ability for the good of my patients, and to try to avoid harming them. Never to do deliberate harm to anyone for anyone else's interest. To keep the good of the patient as the highest priority. It seems he has violated each principle.
If that jack ***** could watch my husband, live in our shoes as he loses his ability to function, limb by limb, watch him struggle to eat a meal without choking, wipe his tears when he is treated poorly by the clerk at the store who obviously thinks he is drunk, well, then maybe he would reconsider. However, everything I read about him points to a cowardly man, who gets off on the provocation of others and their suffering... shame on him.

http://www.als.net/forum/topic.asp?TOPIC_ID=2640

4. The ALS Registry Act, S. 1382, has been frozen by Senate trickery. As a person coping with ALS my dream is to keep it on the front page. This century old disease deserves more than a whisper.
ALS, commonly known as Lou Gehrig's disease, is the most horrible disease in our modern times. ALS is the disease that takes a deadly toll on the body by a process of total muscle paralysis, which causes death in a very short time. While the amount of those being diagnosed is on the rise our numbers remain just low enough for science and the medical companies to turn and look away. ALS is the disease we like to whisper about. Reminds me of the homeless Veteran standing on the roadside with a cardboard sign that reads "Hungry, God Bless."
Senator Tom Coburn of Oklahoma is also a Doctor that thinks the Center for Disease Control collecting data on the variables of ALS is a waste of money. The ALS Registry Act was written and introduced four years ago. Endless hours by ALS Advocates and congressional time taken to approve and make sure it is acceptable has all been lost. The Senator found a way to kill the clock just before the other team won; Senate trickery called a "Hold."
Before adjourning for the year, Coburn vowed to put a hold on any bill that didn't meet a set of criteria that he outlined on his website. Apparently, this is one of the bills that didn't make the cut, but Coburn has not yet issued a specific explanation as to why. He's got a lot of explaining to do with this one -- it is co-sponsored by two-thirds of the Senate and the House of Representatives already passed their version of it by an overwhelming vote of 411-3.

5.
I sent the letter below to CNN, Dateline NBC, Fox News Specials and Nightly News a couple days ago. I haven't heard anything back but I'm betting I got their attention.

Tom Coburn: Doctor, Senator or Terrorist

A doctor to paraphrase the Hippocratic Oath is one who cares for and protects the sick and injured. A Senator is one who has sworn an oath to uphold the Constitution of the United States which contains, "promote the general Welfare, and secure the Blessings of Liberty to ourselves and our Posterity." Then lastly a terrorist which is one who participates in acts which are intended to create fear, are perpetrated for an ideological goal and by a member or members of a group, and which deliberately target, or else disregard the safety of, non-combatants. I would now like to introduce Senator Thomas Coburn from Oklahoma.

Senator Coburn was the sole voice that put a hold on S.1382 the ALS Registry Act. The ALS Registry Act went before the Health, Education, Labor and Pensions committee which Senator Coburn is a member of and all questions were answered with no recommendations for amendments. Senator Coburn had plenty of time to voice any complaints then and there but did not. Previously, the House had passed the ALS Registry Act with an overwhelming 411 - 3 vote.

Amyotrophic Lateral Sclerosis (ALS) strikes silently, slowly eroding a person's ability to control muscle movement. At first, people notice subtle changes, like pain in their feet or slurred speech. But as the disease progresses, they lose the ability to move their arms, to walk and even stand. Many no longer are able to speak, eat or even wink an eye. They are completely paralyzed, yet their minds remain sharp. On average, the victims of ALS die within two to five years after diagnosis. And as their bodies succumb to the disease, there is little they can do to slow the steady progression, for there is no cure for ALS and no effective treatment.

The ALS Registry Act then came to the Senate floor on December 21, 2007 for unanimous consent. At that point following all the previous meetings which had included the silent Senator Coburn he decides to sound off and prevent the bill from passing. That was quite the holiday surprise for the estimated 30,000 - 40,000 people currently living with ALS.

Why did Senator Coburn put a hold on the only hope ALS patients have had in the past 138 years? Oddly enough the Coburn camp is silent on this issue. There are no proud ramblings of stopping this bill on his website. There is no chest pounding in the papers. It is believed that Senator Coburn's intention is to hold the ALS Registry Act hostage as a bargaining chip. I find it odd that if someone else endangers the lives of 30,000 - 40,000 people we call them a terrorist but if it's done in the name of cutting pork belly spending or earmarked funding it's alright. I can't say I disagree with Senator Coburn's desired results but I don't believe hostage taking and terrorist like actions are they way to achieve them.

The ALS community has asked for a chance at life for those currently struggling and those yet to come and Dr. No has answered accordingly.

6.
let's tell the people in oklahoma what their senator coburn's hold on the als registry act means to us pals.

here is the list of papers in oklahoma, just click on one and it will open to the front page.

here is the list of papers in oklahoma, just click on one and it will open to the front page. just like writing any other papers editors i think if enough of us write we just might stir up something.

worth a try.

im sure some of these papers are anti-coburn.


Oklahoma Newspapers
Oklahoma Press Association [Oklahoma City]

The Ada Evening News [Ada]
Altus Times [Altus]
Bartlesville Examiner-Enterprise [Bartlesville]
BA Express [Broken Arrow]
Cherokee Observer [Blackwell]
Chickasha Daily Express [Chickasha]
Cleveland American [Cleveland]
Cordell Beacon [Cordell]
The Clinton Daily News [Clinton]
The Daily Ardmoreite [Ardmore]
The Duncan Banner [Duncan]
Durant Daily Democrat [Durant]
The Edmond Sun [Edmond]
El Reno Tribune [El Reno]
Enid News & Eagle [Enid]
Fort Gibson Times [Fort Gibson]
Grove Sun [Grand Lake]
Hugo Daily News [Hugo]
Jenks Gazette [Jenks]
The Journal Record [Oklahoma City]
The Kingfisher Times & Free Press [Kingfisher]
Lawton Constitution [Lawton]
McAlester News-Capital & Democrat [McAlester]
Miami News-Record [Miami]
Moore American [Moore]
Newkirk Herald Journal [Newkirk]
The News Press [Stillwater]
Norman Transcript [Norman]
Oklahoma Gazette [OKC]
The Oklahoman [Oklahoma City]
Okmulgee Daily Times [Okmulgee]
Owasso Rambler [Owasso]
The Ponca City News [Ponca City]
Poteau Daily News & Sun [Poteau]
Progress Online [Claremore]
Sapulpa Daily Herald [Sapulpa]
The Seminole Producer [Seminole]
Shawnee Online [Shawnee]
Sulphur Times-Democrat [Sulphur]
Tahlequah Daily Press [Tahlequah]
Tulsa Free Press [Tulsa]
Tulsa Today [Tulsa]
Tulsa World [Tulsa]
Union Boundary [Tulsa]
Urban Tulsa [Tulsa]
Weatherford Daily News [Weatherford]

7. Do you think he read the article in the NY Times and is taking a look around here? Wouldn't that be nice. Perhaps he'll chime in?

(For the life of me, I can't figure out why somebody would choose him for an obstetrical care physician when it does not appear that he is a board-certified ob/gyn and when he lives thousands of miles away from his practice half of the week.)

http://www.muskogeehealth.com/Web%20...Pages/obstetri...

8.

By AdvocacyDepartment
Posted today at 12:10 pm
Thanks Bobby for your suggestion. At this time, we strongly encourage people to contact their Members of Congress in support of continued funding for the ALS Research Program (ALSRP) at the Department of Defense.

As we write this, Members of Congress and their staff are in the process of making key decisions on which programs to fund next year. Therefore, it is absolutely critical that we let them know that ALS research at the DOD must be a priority. If you do not act now, as these decisions are being made on Capitol Hill, it may be too late!

The ALSRP is a vital research program that is focused on translational research, leading to the development of new treatments for ALS. Please urge your Members of Congress to support a $5 million appropriation for the program next year. Background information and sample letters you can send are available in the Advocacy Action Center of our website, http://capwiz.com/alsa/home/

We also encourage people to use the Advocacy Action Center to continue to build support for the ALS Registry Act in the Senate. As you know, the House of Representatives overwhelmingly passed the bill last year by a 411-3 vote and 73 Senators - more than two-thirds of the Senate - have cosponsored the bill, which also had been passed by the Senate Health, Education, Labor and Pensions Committee. We continue to work closely with the bill's sponsors, Senators Reid and Warner, to pass the bill in the Senate as soon as possible. We will keep you posted on any additional grassroots action they request.

It is important to note that The ALS Association, CDC and Congress have not waited for the ALS Registry Act to pass in order to begin the registry. Thanks to our efforts, Congress has provided $5 million to create a national ALS registry at the CDC, including $3 million last year! We are pleased that registry projects are underway and CDC is actively working to build the registry.

Letters you can send in support of the ALS Registry Act are available in the Advocacy Action Center.

When contacting Congress, please remember to only contact your Members of Congress. That's because Members of Congress only respond to their constituents, the people who live in their districts and states. So if you or someone you know lives in the state of a Senator who has not cosponsored the ALS Registry Act, please encourage them to reach out in support of this important legislation. To learn whether your Members of Congress have cosponsored the ALS Registry Act, please visit the Advocacy Action Center, here: http://capwiz.com/alsa/issues/bills/?bill=9776036.

We also wanted to let you know that there are many different ways to enact legislation and that the greater support you can generate for a bill, the better your chances of success. Therefore, we must continue to be strategic and focus our efforts where they can make the most difference.

We succeeded in passing the ALS Registry Act in the House by focusing on winning the support of the 411 Members who voted for it rather than tying up our efforts on the three who opposed it. Let's do the same in the Senate. A 99-1 vote is just as effective as 100-0.

Bobby, we also want emphasize, as you did in your earlier posting, that it is important for advocates to continue to "stay on message" when contacting their Members of Congress and focus their advocacy strategically, including where it can make the most difference...when it can make the most difference. Messages that talk about other programs, such as spending money on pork barrel things or sending money to other countries, dilute our own message and make it less likely that our ALS story will be heard. So please continue to tell your Members of Congress about this disease and why they should join us in this fight.

If people have any questions about the ALS Research Program at DOD or the ALS Registry Act, or would like information and assistance, please contact the Advocacy Department at advocacy@alsa-national.org or toll-free at 1-877-444-ALSA.



9. WE NEED TO STEP UP TO THE PLATE AND WE NEED TO HIT BACK.


we all have faces.
but all the work that has gone into the als registry and then one man puts a stop to it.

WE NEED TO STEP UP TO THE PLATE AND
WE NEED TO HIT BACK.

we are writing letters and sending emails but we need to do more.

i'am suggesting we hit back in the senator coburns home state by taking out a full page adds in a couple of the major news papers telling the story about what he has done to the als registry that is going to help cure us.

lets ask the people of oklahoma to speak out for us and tell the senator to make this right and if he does not ask them to vote for the other guy or gal.

america has been going down hill for a long time now, yet we keep spending money on pork barrel things and sending money out of america to countries.
its time to stop and take care of our own needs.


__________________


ALS/MND Registry
http://www.patientslikeme.com/registry



10. do you suppose we could get his home phone number and chat with his wife say friday eve about 6m? just to leave a message for the senator. [it worked for me to get out of a stubborn gym membership once]. could we get in trouble for that? i'll make the call. course i sound a bit drunk but maybe that's a good thing.....

http://www.congress.org/congressorg/home/