ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Friday, August 22, 2008

K ALS -- Republican National Convention

Senator Coburn may have actually provided the ALS cause with a media opportunity...

ALScounts

Network cameras on some K ALS signs would be a beautiful thing to start the conversation among Republicans and all citizens about the importance of making an ALS Registry happen.

Wednesday, August 20, 2008

Doing Advocacy 24x7 Part II

From the PALS and caregiver-spouse who are always tuned in to advocacy and awareness... a description of their experience talking in schools about ALS --

We suggested to the teachers that they have their class watch "Tuesdays with Morrie" to give them a basic understanding of ALS. I think high school students are more mature (not much but a little) and are better able to take what is said with them the rest of their life. Also, by going to the Health Occupations classes you are targeting students who already have an interest in the health field, many of them will become CNA's soon after high school graduation. The students had some very good questions. We tried to make it fun, that was even one of the questions...how can you remain so positive? We got phone calls and emails from parents who knew us telling us how their kids had come home talking about our visit. It was a rewarding experience for us and hopefully a memorable one for the students. A couple months after our visit we were at a community picnic and one of the boys from the class came up to us and said he remembered us from the school and asked Ken how he was doing.We started with 2 schools last year and this year we want to cover as much of the county as we can. We are thinking about going to the Community College as well...

Tuesday, August 19, 2008

Doing Advocacy 24x7

The following post was on the patientslikeme.com forum last week. It speaks volumes about the power of simply explaining ALS and getting the word out at every opportunity. If each of us (especially the healthy ones) would make the effort to start conversations and inform others, we would make an impact.

Thank you all for your thoughts and prayers. Ken is enjoying reading every one of them...Ed - Ken made that picture his wallpaper. By the time we left the hospital EVERYONE knew who Ken was and were educated on ALS (ESPECIALLY that idiot doctor who asked him if his ALS was getting better). The nurses only had to send out an "all points bulletin" once to find Ken who was out cruising the halls when the doctor came looking for him. One of our CNA's remembered us from our visit to her high school where we went to talk to the Health Education classes about ALS. Another one asked if we were at the Manatee's ball game on July 4th because she thought that was Ken who threw out the first pitch. Although it was not good for him to have to be in the hospital, it was encouraging to know that we have made an impact in raising awareness.Even when he is sick, his ideas never stop. He is coming up with several ideas for awareness...and I am sticking to my guns about the long wheelchair trips! I am certain once he has all the fine details worked out he will unveil them to you.Thanks again,Glenda

ALS Association Communication

Following is from an ALS Association communication issued today:

District Meeting Update

Thank you to everyone who already has scheduled meetings with their Senators over the August Congressional recess. So far, we have had great feedback as a result of this outreach. In fact, ALS Advocate Billy Dyle from Mississippi received a personal telephone call from Senator Thad Cochran (R-MS) over the weekend indicating that he will support S. 3297! Senator Cochran, who is the Ranking Member of the Senate Appropriations Committee, did not support proceeding to S. 3297 during the vote in July. Thanks to Billy’s outreach, we are now at least one Senator closer to securing the 60 votes we need to help pass S. 3297!

Billy’s successful outreach to Senator Cochran is an example of the difference your advocacy can make this summer. So if you have not already scheduled meetings with your Senators, please do so immediately! Your efforts can help us pass the ALS Registry Act this year!

As you schedule your meetings with Senators back in their home states, we wanted to let you know that the Advocacy Department has helped craft a coalition of other organizations to advocate for S. 3297. The coalition includes groups like the American Heart Associations and others who support legislation that also has been blocked by Senator Tom Coburn and which has been included in S. 3297. Our coordinated coalition activities will build upon your outreach over the recess. We will keep you updated on these efforts.

2008 I Took the Extra Step Advocacy Guide

To help you incorporate advocacy into your walk and walk kickoff events, we are pleased to provide you with the latest I Took the Extra Step advocacy guide. The attached guide includes instructions on how you can participate in this important campaign, which has generated tens of thousands of letters to Congress and helped Chapters recruit ALS Advocates to join their local advocacy efforts.

At this time, we are asking Chapters to focus on recruiting advocates at your events so please make available copies of the enclosed ALS Advocate sign-up form at your upcoming events. However, because our advocacy strategies may change when Congress returns from the August recess, please be sure to check with the Advocacy Department about two weeks prior to your event to ensure you have the most up-to-date materials.

Your participation in the ITES campaign not only produces results, but also empowers PALS and families with the tools and information they need to play a greater role in the Chapter’s year round activities.In the meantime, please contact us at
advocacy@alsa-national.org or 1-877-444-ALSA if you have any questions or would like assistance scheduling meetings or participating in the ITES campaign.

Thank you!
The ALS Association
Capital Office
601 Pennsylvania Ave., N.W. Suite 900, South Bldg.
Washington, DC

Friday, August 15, 2008

If you live in a city with a Gannett paper...

Please ask your paper if it would run Rekha Basu's column from the DesMoines Register (a Gannett paper). The content would serve as an informative call to action in any locale.

Here are Gannett cities --
http://www.gannett.com/web/newspapers.htm

...and suggesting to USAToday might result in the home-run visibility the ALS Registry Act needs.

Here is again the link to Rekha's column --
http://www.desmoinesregister.com/apps/pbcs.dll/article?AID=/20080815/OPINION01/808150345/1166/OPINION01

Rekha Basu - The DesMoines Register

Column in the August 15 DesMoines Register

Registry could help unlock secrets of ALS
REKHA BASU
rbasu@dmreg.com

The obituary page last Wednesday had two prominent tributes to Central Iowans who died within a day of each other. Velma Miklus of Des Moines was a 75-year-old grandmother. Roger DeGroot of Urbandale was a 49-year-old father. Linking them was the cause of death: ALS. Until recently, few people even knew about the illness that kills about 60 Iowans a year.

Though 20,000 Americans are living with amyotrophic lateral sclerosis, it's hard for them or their loved ones, consumed with the demands of daily care, to be out raising awareness or lobbying for a cure. It attacks fast, usually killing within two to five years, first stripping the ability to walk, talk, swallow or breathe on one's own.

Still it's baffling that 67 years after the death of Yankees legend Lou Gehrig, we have no idea what causes ALS, or the failure of motor neurons (nerve cells) that defines it. In about 95 percent of cases, it seems to strike at random. Researchers don't even know what environmental, occupational, family history or other factors may link people with ALS.With so little to go on, the 5,600 people diagnosed every year know only that it is a death sentence. There are clinical trials but, so far, nothing promising. There's the prospect of embryonic stem-cell surgery - once the ban on federal research on it is lifted.


At the very least, there should be a national database of patients so researchers can findpatterns. But a bipartisan bill in the U.S. Senate to create one is being blocked by one senator, Republican Tom Coburn of Oklahoma.The bill would create a national ALS registry at the Centers for Disease Control. The House passed it 411 to 3. In the Senate, 77 members are co-sponsors. In response to Coburn's unilateral roadblock of that and other legislation, Senate Democratic leaders last month included the ALS Registry in an omnibus bill called Advancing America's Priorities. But Republicans filibustered that, too.

Coburn objects to any disease-specific legislation, says his spokesman John Hart; he also put a hold on a breast-cancer research act. He thinks the CDC and the National Institute of Health should make their own decisions: "It's really about members of Congress wanting to reap the political benefits of an emotionally sensitive target," said Hart. Mostly, though, what Coburn objects to is the $75 million he says it would cost, though he also opposes the bill without any funding.

Coburn, by the way, is a doctor.


A CDC spokeswoman, however, acknowledged what advocates in the ALS community say the bill would provide congressional authority to do: coordinate with other agencies such as the NIH and Veterans Administration.

There are 250 Iowans living with ALS. Jason Lee, who heads the Iowa chapter of the national ALS Association, sees a database as essential. "A lot of doctors are locked because we don't have good patient information," he says. Lee says there are registries for other illnesses, such as lupus.


Theories abound linking ALS to printing presses, metals, farm chemicals, wars. It seems to strike veterans with greater frequency, and Gulf War veterans 50 percent more than the general population. Maybe if we knew what else sufferers have in common, we could learn why.


There's a move afoot to try to bring the act (Senate file 3297) to a floor vote when the Senate reconvenes next month. Lee urges proponents in every state to lobby their senators.


Even with a registry, a cure is probably a long way off. But without one, there's almost nothing to go on. Once you've seen this insidious illness up close, as I did watching my late husband suffer from it, you can't turn your back. Nor can you fathom how a politician can deliver such a hard slap to any hope on the horizon.


Wednesday, August 13, 2008

Don't Let Coburn Control the Discussion!

He's still at it...

TulsaToday

If you read the article and have any personal connection with ALS, I'm sure that you'll find the sentence regarding the chimpanzees extremely offensive.

People with ALS have to spend a lot of life sitting down, but you sure don't have to take this kind of flack sitting down!

Coburn is also suggesting that the disease-specific legislation be stripped from the Advancing America's Priorities Act. That's peachy for diseases that can attract research dollars because of the market potential for their cures. That's not so peachy for a disease like ALS whose patient population is perceived to be small and short-lived. Time is running out for us to get the ALS Registry Act passed.

Please try to raise some awareness in local and national press about the urgency of an ALS Registry for a disease that has persisted for 139 years without an effective treatment, without a clue of the cause, without any steps toward prevention.

This is America. Please speak up. We need to counter the offensive Coburn press offensive.

Sunday, August 10, 2008

Save Time and Travel Expense - Make an Impact!

The Senate is on its annual August break. Most Senators are back in their home states.

Please consider making an appointment to see your Senators (especially those who voted not to vote on the Advancing America's Priorities Act before the break). This is a whole lot easier (and a lot less expensive) than trekking to Washington in May for Advocacy Day, and your Senators will remember constituents who care enough to show up and talk to them at home.

The request can be simple. There is a need to collect and retain data on people with ALS so that the disease can be figured out. As http://www.alscounts.com/ says, "How can we connect the dots if we are not even collecting the dots?"

If the Senate can simply get over partisan bickering long enough to vote to vote on the Advancing America's Priorities Act, we can get the deal done. Yes, they need to vote to agree to vote on the Act. If they think that it's politically advantageous to be a party to legislative gridlock, we need to tell them that they're wrong.

That's it. It's that simple. Please ask for even five minutes on your Senators' calendars while they're at home on break. Chances for getting real Senator face time are a lot better at home than in DC. You could make the difference!

Friday, August 8, 2008

The Power of the Op-ed Pen

Senator Thomas Coburn, M.D. (R-OK) has become a media darling in the last few months and has positioned himself in the press as a fiscal conservative with the courage to just say, "No," to spending of all kinds, including the ALS Registry Act. His approach plays well in sound bites and word bytes to a nation feeling the effects of unbridled deficit spending.

When the Senate returns in September, the elections will be center stage, and it will be difficult to achieve bi-partisan anything. If the Advancing America's Priorities Act (Senator Reid's package of bills held by Coburn which includes the ALS Registry Act) isn't brought to a vote, we have to start all over with a registry effort in the new Congress in January. That's a waste in many ways. We need to let the world know that Coburn's just-say-no fiscal policy doesn't work for the ALS problem. If we don't get clever and use information to solve it, ALS won't just go away on its own. It hasn't yet in 139 years.

Coburn knows how to get good press. He has been featured in the last couple of weeks in the Wall Street Journal (they love him for standing up for fiscal principles), the New York Times, the Washington Post, and others. He knew how to get the media to get him to shine in the spotlight of his showdown with Senator Harry Reid.

The Senate needs to vote to agree to vote on this package of bills... now. We need to get some balance to Coburn's press. There is more to this whole fight than responsible fiscal conservatives versus socially conscious liberals. There is posturing for an election going on. The talking heads tell us that the minority party likes it when the majority party can't get things done. Hmmmm.

Please consider becoming an op-ed writer.... now. Most publications require them to be short (the essays, not the writers) and very much to the point. People with ALS or those who have been caregivers can certainly make their points with a little zing. Chances of being published are a long shot (especially for those of us who aren't professional writers), but right now, the chance of getting the Advancing America's Priorities Act to a vote in the Senate is a long shot. We know we won't beat this $%%^&*$#@ disease unless we take some shots.

Click here for helpful suggestions on writing op-ed pieces from Fairleigh Dickinson University.

If you know any professional writers, please plant the idea with them, too.

Thursday, August 7, 2008

Christopher and Dana Reeve Paralysis Act

It's in the same "Coburn Omnibus" package as the ALS Registry Act. We're in this together now.

Statement from the Christopher and Dana Reeve Foundation.

Letter to Editor - Press & Dakotan

From Yankton Press & Dakotan Letters to the Editor --

Compassionate Conservatives?
By Leo Hallan, Yankton
Published: Wednesday, August 6, 2008 9:57 PM CDT

“Compassionate Conservative.” A good phrase I don’t think I heard it until GWB’s run for president. I thought ‘Yeah, that pretty well describes me’ and had hoped to see it happen.Man, have I been disappointed. No conservative in a national political office should use this term again because they’d be lying.

On Monday, July 28, the Senate voted to not bring up a vote on a package of 34 of the 90 bills being held up by Sen. Coburn from Oklahoma. Yes, a vote to stop a vote. One senator said these bills could wait. He obviously has not spent a day in a wheelchair or has a loved one dying from ALS or cancer. To us, time is our enemy and has a whole different meaning.One was the Christopher Dana Reeve Paralysis Act, hence my interest. Also bills to establish an ALS registry to help researchers, the Conquer Childhood Cancer Act of 2007, the Prenatally and Postnatally Diagnosed Conditions Awareness Act, Runaway and Homeless Youth Protection Act, Comprehensive Tuberculosis Elimination Act — please look up the rest.There were two or three of these 34 maybe not that important. However, a group of conservative Republicans threw the baby out with the bath water. They are giving conservatism a very bad name and reputation. The total package, if funded, would have cost approximately $10 billion for American concerns, yet within two weeks we will have spent more than that to rebuild Iraq. We spend $14 billion a year caring for those that are paralyzed and researchers have treatments ready for us. A compassionate conservative came down and shut my sprinkler off because I couldn’t, another checked my van over because I couldn’t — I could go on and on.

Our Sen. Thune voted along with Sen. Coburn, and my health can’t take much more of their kind of compassion. After Monday’s vote, all respect for Sen. Thune I had is gone. I know we are just pawns in his political games.

Wednesday, August 6, 2008

Senators Like Their Charts

Here is an ALS-awareness visual aid for Senators from ALScounts --

http://www.alscounts.com/slog.html

August 1 entry has the whole kit.

ALS Association Communication

Following was an ALS Association communication issued today:


Dear Public Policy Chairs and Executive Directors,

Per this afternoon's Advocacy conference call, we encourage Chapters and advocates to schedule meetings with their U.S. Senators during the month-long August Congressional recess, which ends September 5. We want to use this opportunity to build support for the Advancing America's Priorities Act (S. 3297), which includes the ALS Registry Act. Our goal is to generate enough support for the bill so that we can pass the legislation when Congress reconvenes in September. This may be our only opportunity to pass the bill this year so your outreach is critical.

We are providing the attached District Meeting Guide to help you in this effort. The guide includes instructions to schedule meetings as well as talking points you can use. We also have attached "leave behind" materials you can provide to your Senators as well as background information that responds to the arguments Senators have used in opposition to S. 3297, including points that Senator Tom Coburn has raised. Finally, some Senators have raised concerns about the bills included in S. 3297. To help you respond to those concerns, below are a few quick facts.


Each of the 35 bills included in S. 3297 has broad bipartisan support; The bills that received recorded votes in the House (15 recorded votes) received on average 379 votes in favor, including an average of 159 Republican supporters; The bills that did not receive recorded votes were so non-controversial that they passed by voice vote in the House (18 voice votes in all)--For 11 of the bills (almost 1/3 of the package), a Senate Republican actually introduced the underlying bill; There is at least 1 Senate Republican co-sponsor on every bill; most have multiple Republican co-sponsors; The bills have seen extensive legislative action -- All of the bills have been marked up by the relevant House Committee, voted on the House floor, and/or considered by the relevant Senate Committee (most have had all three); Throughout the extensive legislative action, over 60 amendments to the underlying bills have already been considered by Congress; One bill has already passed the Senate and the House; Fourteen of the bills have been languishing on the Senate calendar, including the ALS Registry Act, since 2007; On average, action on the bills has been delayed 6 months.

We hope this information is helpful to you as you continue to reach out to your Senators this month.

Please don't forget to keep us updated on your meetings and send any feedback you receive to us using the Meeting Report form included in the Guide.

If you have any questions or would like additional information, please contact Pat Wildman at
pwildman@alsa-national.org or 1-877-444-ALSA.

Thank you!

The ALS
Association
Capital Office
601 Pennsylvania Ave., N.W.Suite 900, South
Bldg.Washington, DC 20004ph: (202) 638-6997Toll-free: 1-877-444-ALSAfax: (202)
638-6316e-mail:
pwildman@alsa-national.org

Sunday, August 3, 2008

Making It Less About The Perp

Perhaps you've heard the news story about the Boston man in a wheelchair who was robbed of his wallet in an MTA station.

Perhaps you've heard the news story about the Boston man with ALS in a wheelchair who was robbed of his wallet in an MTA station.

This is an great example of an ALS advocate getting the challenges of the disease out of the shadows, and making the news story about more than a pathetic thief.

Boston Herald Coverage

This Just About Sums It Up...

Below is an editorial from The Miami Herald this morning. Regardless of your feelings on the oil issues, this certainly makes some excellent points about our elected officials' ability (or willingness) to get things done. Which is it? --

Sun, Aug. 03, 2008
The silly season on Capitol Hill
Put together a lame-duck president, a lame-duck Congress, an election year, two wars and an incipient recession and what you get is the current mess in Washington. And what a mess it is. While more Americans lose their jobs and the economy stalls, Democrats and Republicans -- and the president, too -- join hands in an apparent effort to see who can pull off the silliest political antics.

Last week was typical. On Monday, GOP senators blocked a bill that would aid victims of torture, disability and disease, insisting the legislation would add to the deficit and demanding that Congress first act to lower soaring gas prices. Add to the deficit? Whom are they kidding? That very day the White House predicted that President Bush would leave a record $482 billion deficit to his successor in the 2009 fiscal year. Where were the GOP's ''fiscal hawks'' while the administration piled up outrageous deficits year after year?

After political points
As for lowering soaring gas prices -- that's a hoax. What the GOP majority wants, with the full backing of Mr. Bush, is a bill to allow energy companies -- already flush with record profits -- to drill in coastal waters. This would do nothing to reduce gasoline prices for years to come, if then, but it would allow the GOP to score political points with energy lobbyists. Senate Democrats are right to hold the line.

Meanwhile, over in the House, some Democrats attempted a hoax of their own. They tried, but thankfully failed, to persuade Congress to tap into the Strategic Petroleum Reserve, the nation's oil bank for emergencies. The relief offered by opening the SPR spigot would prove short-lived. It's the equivalent of pawning the family silverware in order to buy enough fuel to enjoy one last, wild ride in a gas-guzzling V-8 before putting it up on blocks on the front yard.

Instead of playing these games, members of Congress should concentrate on bills that can actually pass. The omnibus measure blocked by GOP senators included the Emmett Till Unsolved Crime Act, aimed at investigating unsolved civil-rights era crimes; the Christopher and Dana Reeve Paralysis Act; a runaway and homeless youth bill; a bill to combat child exploitation by pornographers; a measure to create a database for Lou Gehrig's disease victims, and aid for new mothers suffering depression.

Coastal drilling deadlock
These laws would actually do some good. They are needed. So would a bill designed to protect journalists from having to identify their sources in court, which failed on Wednesday because it could not get enough votes to break a Republican filibuster. The bill, sponsored by one of the ranking Republicans in the chamber, Sen. Arlen Specter of Pennsylvania, passed the House 398-21, but it, too, fell victim to the Senate deadlock over coastal drilling.

Congress has done some good, such as passing the giant housing-rescue bill that might prevent a total collapse of the market, but members have spent too much time playing politics. On Friday, Congress adjourned for the August recess.
Members are scheduled to return after Labor Day, but if they keep on behaving like this, why bother? They might as well stay home and save us all the trouble of having to put up with yet another round of partisan bickering.

Saturday, August 2, 2008

MDA Comments on ALS Veterans' Benefits

Following is from the MDA website

_____

VA EXPANDS FULL CARE BENEFITS TO ALL VETS WITH ALS
UPDATE – Aug. 1, 2008

The VA posting of the new policy that was expected today has yet to be released. As soon as the official announcement is made, it will be posted on this site.

TUCSON, Ariz., July 16, 2008– The VA posting of the new policy that was expected today has yet to be released. As soon as the official announcement is made, it will be posted on this site.

Great news for many of America's military veterans who have ALS. On July 14, in a press release following a conference call with the secretary of the Department of Veterans Affairs, it was announced that the VA will broaden its compensation for all ALS-affected vets. The press release was issued by both Sen. Lindsey Graham and Rep. Henry Brown.

Prior to this time, only veterans with ALS who had served in the Gulf War (August 1990-February 1991) were accorded "service-connected disability" status by the VA. It's the agency's highest disability rating, and it makes the greatest degree of no- or low-cost VA medical care available. Now VA secretary Dr. James Peake says all vets with ALS will be accorded the service-connected designation, effective August 1.


MDA Vice President of Advocacy Annie Kennedy said the decision was one the Association has been hoping for. "The VA made its initial decision to fully Compensate Gulf War veterans with ALS in 2001," she said. "For seven years the ALS advocacy community has pushed to get all ALS-affected service people included in that package of care. This is wonderful news for the ALS community."


The ALS Therapy Development Institute (ALS TDI) in Cambridge, Mass., an MDA partner in the fight against ALS, took a leading role in advocating for this
policy change.

Friday, August 1, 2008

Information for Veterans with ALS from ALSA

Following is from ALS Association Washington, DC office --

Veterans Benefits Update
As you know, The ALS Association has been working to establish ALS as a service connected disease to ensure that veterans with ALS receive the disability and health benefits they need when they need them. In July, we shared with you that the Secretary of Veterans Affairs was planning to announce that veterans with ALS will automatically be considered service connected and eligible for full VA benefits, as of today, August 1, 2008.


We wanted to update you that the VA has not made any announcement of a change in policy for veterans with ALS. However, we continue to anticipate that the VA will issue regulations on this issue and will establish ALS as service connected disease. The details of those regulations are still under review at the VA and it is not yet clear exactly when regulations will be officially announced.Therefore, until regulations are released and the VA makes an official announcement, we continue to emphasize that the issue is still under review and details have not been finalized.

We also want to alert veterans with ALS and ALS Association Chapters that some organizations have released and posted on their website inaccurate and misleading information about this issue stating that veterans with ALS are considered service connected as of today, August 1. THIS IS NOT TRUE. Unfortunately, the organizations that have shared this information have not been involved in the executive branch rulemaking process and have based their information on unsubstantiated accounts. We encourage Chapters and veterans to share this alert with others in the veteran community so that they receive accurate information on the status of this important issue.

We also encourage veterans to join our
Roll Call of Veterans so that we can provide them with the latest updates on this and other issues important to veterans with ALS. As The ALS Association and our VA Issue Team continue to work with the VA, we will keep you posted on the latest developments on establishing ALS as a service connected disease. If you have any questions, please contact the Advocacy Department of The ALS Association at advocacy@alsa-national.org.