[BobbyB]

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.

[BobbyB]

Life and Breath, Letter to the Editor

ALS patients nation wide are being held hostage this Christmas by a Grinch on Capitol Hill. His name is Tom Coburn, Senator from Oklahoma. The Wall Street Journal posted the front-page article on Dec. 21st and detailed how this Senator worked late while others adjourned for the Holidays. His scrooge style mission was to place a "hold" on selected bills, a procedural maneuver that allows a single senator to prevent a bill from being passed quickly without a roll-call vote or floor debate.

The Registry Act would give the Center for Disease Control the authority to compile data on the civilian population currently affected by ALS. This data will provide a snapshot of ALS’s affect on Americans that we have never had. At present, S. 1382 has passed the House with a vote of 411 to 3. It has cleared the HELP committee chaired by Senators Kennedy and Senator Enzi Nov. 14, 2007 as written. The bill currently has 68 Senate signatures. I understand our legislature’s procedural thoroughness, and that some issues necessitate careful deliberation or partisan debate, but taking a step towards fighting ALS needs no second thought. I am a person coping with ALS, and I refuse to go quietly and allow Senator Coburn to walk out on ALS.

ALS (Amyotrophic lateral sclerosis), often referred to as Lou Gehrig's disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord leading to paralysis. Life expectancy after diagnosis is 2-5 years: those years are akin to hell on earth. ALS can strike anyone, at any time, regardless of age, sex or ethnic origin. The usual age of onset ranges from 55 to 65, but people under 20 have been diagnosed with ALS. My wife must now become my nurse and fulltime caregiver. The greatest cruelty of ALS is that it cuts life short before life is even over.

On the same day in May, two different statements were being made in Washington D.C. On Capitol Hill, ALS advocates, patients, and caregivers were meeting with Representatives from all states, and if Representatives were not available, we were greeted by staff aids. We had our finest clothing on and challenged the Hill in our mighty power chairs. We dressed nice in an attempt to be normal and the day was long and grueling with many retiring early from their demanding schedule.

Up the street west of Capital Hill, another ALS patient and advocate was challenging the White House all alone. A young filmmaker, Patrick O'Brien, was positioning himself for the ultimate statement on ALS. He was setting up for a black and white photo, nude in his power chair with the White House in the background. On his chest was written the words, "Every 90 minutes a person will die of ALS". His message was harsh—harsh for the President and certainly too harsh for the majority of my ALS friends.

This is not a game of Patty Cake but a matter of life and breath. I believe we have to take a different and serious approach. How will we ever be noticed if we continue to play dress up? We have played fair long enough and the time has come to expose the sad facts. People with ALS die. They die so quickly that there are far fewer of them in our midst at any moment in time. That doesn't mean that the threat of this disease leaves our midst.

In the words of 9 year old Emily Chamernik regarding her 37 year old mother Aimee. "My mommy does not read us stories anymore, she has a hard time talking. Someday soon she will die and me and my brothers will miss her".
__________________

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

[BobbyB]

Lou Gehrig's Patients Get Their Bill Blocked
January 7, 2008 - by Donny Shaw
Leon Peek writes:




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.

Leon also passed along a link to his blog where he has more to say about the hold Senator Tom Coburn (R-OK) placed on this bill to establish a program for tracking patients with Lou Gehrig's disease:

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 along the roadway with a cardboard sign that reads "Hungry, God Bless."

The person with the three identities is Senator Tom Coburn of Oklahoma. He is the 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.


http://www.opencongress.org/articles...r-Bill-Blocked
__________________

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

[BobbyB]

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.