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.

Monday, September 29, 2008

Walks to Defeat ALS - They're Much More Than Fundraisers

Walks are an excellent excuse to get ALS into the media. If you live in an area having a walk, please send items to community calendars and church bulletins, put handbills up in every store and coffee shop and school and bank and dry cleaner and doctor you frequent. Offer to do on-air interviews. Send op-eds and letters to print media. Having thousands of members of the public see the letters "A L S," is itself a key component of spreading awareness of this often forgotten disease.

If you are fixated only on the fundraising (which is indeed important), you lose perhaps the bigger benefit of the walks. They are demonstrations against ALS, they are supportive activities for those dealing with ALS or grieving, and they get the public health problem in front of people who don't realize that Lou Gehrig's Disease hasn't been cured yet.

We here all know how urgent the problem is. We need to shout to the rooftops to get the attention of others. News outlets will give a walk some coverage, and we all need to take advantage of that to get the ALS message out.

Browsers Seek Veterans' Information

The website traffic analysis for this site for the last month is very revealing.

The topics related to veterans with ALS were overwhelmingly in the highest demand. Most searches that found the site also had keywords related to the military or veterans and ALS.

We'll do our best to keep the information here as current and accurate as possible, and we'll be on the lookout for information pertinent to veterans. We welcome suggestions. Thanks. The traffic finding this site indicates that it's a worthwhile endeavor.

Saturday, September 27, 2008

Does Anybody Know Anybody At The White House Press Office?

http://alsspreadtheword.blogspot.com/2008/09/you-have-chance-to-do-more-than-just.html

NFL's Wally Hilgenberg Dies from ALS

From the UPI story --

Vikings great Wally Hilgenberg dies

MINNEAPOLIS, Sept. 24 (UPI) -- Former Minnesota Vikings linebacker Wally Hilgenberg has died after a two-year battle with ALS, Lou Gehrig's disease. He was 66 years old.

The former University of Iowa All-American died Tuesday morning at his Lakeville, Minn., home surrounded by family members.

Hilgenberg was a fourth-round pick by the Detroit Lions in the 1964 NFL draft, but his best
playing days were from 1968-79 with the Vikings' "Purple People Eaters" defensive line.

He played in all four Vikings Super Bowl appearances and before he retired in 1979, and also played for Pittsburgh Steelers.

"As good as a football player as he was, he was even a better guy," said one-time teammate and longtime friend Stu Voigt. "I can honestly say that I was better as a football player and am better as a man for knowing (him)." "He was a great guy in every respect," said former Vikings coach Jerry Burns. "Everything about him was first class."


The list of NFL players stricken with ALS is startling (see September 8 blog entry). Perhaps the NFL Players Association would help raise the question as to whether there is a football connection to ALS.

Media Release from ALS Association Regarding ALS Registry Act

Following is from the ALS Association:


Congress Votes to Create National Registry for Lou Gehrig’s Disease;
President Expected to Sign ALS Association Priority Into Law


CALABASAS HILLS, Calif. (September 26, 2008) – Congress took a major step in the fight against Lou Gehrig’s Disease today when the House of Representatives passed the ALS Registry Act (S. 1382). The legislation, which passed the U.S. Senate on September 23, now heads to President Bush, who is expected to sign the bill into law.

The ALS Registry Act would establish the first ever national patient registry of people with Lou Gehrig’s Disease, or amyotrophic lateral sclerosis, to be administered by the Centers for Disease Control and Prevention. The registry would collect information leading to the cause, treatment and cure of the deadly neurological disease that took the life of baseball legend Lou Gehrig in 1941.

“The ALS Association and people with ALS across the country have been working with Congress for nearly four years to pass this critical legislation,” said Gary Leo, president and CEO of The ALS Association. “It’s long overdue. Today, the U.S. Congress has made it clear that our nation is committed to finding a treatment and cure for this horrific disease.”

It has been nearly six decades since Lou Gehrig lost his life to ALS. Although more is known about the disease today, there is no known cause or means of prevention, nor is there an effective treatment or a cure. In fact, the prognosis for a person living with ALS today is nearly the same as it was for Gehrig: death in an average of two to five years.

The ALS Registry Act enjoyed broad bipartisan support thanks to the grassroots efforts of thousands of people with ALS and their families who reached out to Congress as well as the efforts of Congressional leaders to shepherd the bill through the legislative process.

“Today’s victory could not have been accomplished without the active involvement of people with ALS and their families,” said Steve Gibson, The Association’s vice president of Government Relations and Public Affairs. “And it could not have passed without the bipartisan leadership from Senate Majority Leader Harry Reid (R-NV), Senator John Warner (R-VA), Senator Lisa Murkowski (R-AK), Representative Eliot Engel (D-NY), and Representative Lee Terry (R-NE). The ALS community deeply appreciates their commitment to our cause and their tireless efforts which have directly led to today’s victory. ”

Gibson also noted that the bill will benefit our nation’s military veterans. “Although ALS can strike anyone, regardless of their age, gender, race or nationality, recent studies have shown that the disease strikes military veterans at approximately double the rate as the general population. A national registry will enable us to learn why our veterans are at greater risk of ALS so that we can take action to help them and to protect the lives of our heroes serving in the military today. We urge President Bush to sign this critical legislation into law.”

The ALS Registry Act was introduced in the Senate by Reid and Warner and in the House of Representatives by Engel and Terry. As Congress sent the legislation to President Bush, members of Congress from both sides of the aisle acknowledged the more than three-year fight that led to today’s action and noted the important role a national ALS registry will play in the continuing fight for a treatment and cure.

“After years of obstruction, both chambers of Congress approved our legislation that will give hope to those affected by ALS,” Reid said. “This bill will arm scientists with the tools they need to make progress in the search for a cure for ALS, or possibly a way to prevent this devastating disease in the first place. I am so pleased that we were finally able to pass this legislation on behalf of all of the individuals and families who have shown exceptional courage and grace in the face of this difficult illness.”

“The great Lou Gehrig put a national face on ALS over 65 years ago, and my own family was devastated by the death of my grandmother, Dora Engel, who is believed to have passed away as a result of ALS in her 50s,” Engel said. “The establishment of a registry will bring new hope to thousands of patients and their families that ALS will no longer be a death sentence.”

The ALS Association is the only national not-for-profit health agency dedicated solely to the fight against ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig’s Disease). The ALS Association is fighting on every front − research, patient and community services, public education, and advocacy − to improve living with ALS. The mission of The Association is to lead the fight to cure and treat ALS through global, cutting-edge research, and to empower people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support.


Additional quotes from members of Congress:

House of Representatives
“All diseases bring hardships on those afflicted, but ALS is particularly cruel in the quickness of the onset, the severity of the symptoms and the fatal nature of the condition.” – Rep. Lee Terry (R-NE)

Senate
“After years of hard work, I am pleased Congress has passed the ALS Registry Act. This legislation provides for the creation and maintenance of a single nationwide ALS registry. With an estimated 30,000 Americans affected by this disease at any given time and some 15 new cases of ALS diagnosed every day, this much-needed legislation will help provide hope for those affected and their families.”
– Sen. John Warner (R-VA)

“It has been nearly 70 years since Lou Gehrig’s diagnosis and almost 150 years since ALS was first detected and yet we still have no effective treatments or a cure. This is a true victory for the nearly
6,000 Americans diagnosed with ALS every year and for those we have lost to this vicious disease. While the National Institutes of Health (NIH) must continue to research ALS, in the interim, we can facilitate these efforts by providing for a national registry to help find a treatment and cure for ALS.”
– Sen. Lisa Murkowski (R-AK)

###






Tuesday, September 23, 2008

Information For Veterans with ALS from the ALS Association

Following is from the ALS Association:

As you know from the great news we shared last night, the VA has officially published regulations establishing ALS as a service connected disease. As of today, September 23, all veterans with ALS automatically will be eligible for benefits - no matter when or where they served and no matter how soon after discharge they were diagnosed.

The ALS Association worked closely with the VA in announcing the new policy and we will continue to partner with the Department to identify veterans with ALS and ensure they receive the benefits they need and have earned. Additional information on the benefits available as well as how to obtain benefits can be found below. To read today's press release from the Veterans Administration click here. Click here to read The ALS Association's press release.

Thank You
We again would like to thank all veterans for their efforts to advocate for this vital benefit. In particular, we would like to recognize three veterans with ALS whose outreach to Congress and the VA played critical roles in this victory: Jeff Faull, from our Greater Philadelphia Chapter, Tom Mikolajcik (USAF) Ret. who helped found our South Carolina Chapter and Jim Thew, from the Greater Chicago Chapter. Jeff, Tom and Jim deserve our thanks for their tireless efforts to make this benefit a reality. Click
here to read more about these great advocates.

Additional Information Available
Now that we have won this battle, it's time to make sure veterans with ALS receive the benefits they need as soon as possible. Therefore, we are providing the following links that include additional information on the new policy as well as guidance on how veterans can access benefits. The Association will be posting this and other information to our website in the coming days, including answers to frequently asked questions. However, if you have other questions about accessing benefits or about the new policy, please contact The Association's toll-free hotline at 1-800-782-4747 or
alsinfo@alsa-national.org.
Select the following links for additional information:
Accessing Benefits
Service Connected Benefits
Summary of New Regulation
Text of New Regulation
Veterans Service Organizations: Local Contact Information

Coming soon: Frequently Asked Questions
Join the Roll Call of Veterans Our success on this and other issues important to veterans with ALS is the direct result of the active involvement of veterans in our advocacy efforts. Through our Roll Call of Veterans, we have helped empower veterans with the information and tools they need to improve benefits and advance research in the fight for a treatment and cure. It's clear that we have made a difference.
However, we still have more work to do. We need to learn why veterans are at greater risk of ALS, develop new treatments for the disease and even prevent this disease from striking in the first place. By joining the Roll Call of Veterans, you too can make a difference. If you are a veteran, please join the Roll Call of Veterans! Visit our website at:
http://capwiz.com/alsa/mlm/verify/.

Statement from the ALS Association

Following is a statement from the ALS Association regarding the ALS Registry Act:

Senate Passes ALS Registry Act

The United States Senate passed the ALS Registry Act on September 23, marking a huge victory for people with ALS and their families across the country. The outreach from the ALS Community in this effort has made a difference!

The bill now heads to the House of Representatives, which is expected to quickly agree to the Senate version, which included technical changes made during the legislative process. The ALS Association will keep the ALS Community updated as the bill moves toward enactment into law.The ALS Association extends congratulations to everyone who has worked so hard to make this day possible!

Today We Are Grateful and Incredibly Happy

The ALS Registry Act was passed by unanimous consent in the Senate today after a compromise was brokered with Senator Coburn.

Thank you, Senator Reid.

Thank you, Senator Murkowski.

Thank you to every person who emailed a legislator or stalked a Senator in an airport or made a trip to Washington or to a local office to be heard.

Thank you to every person who raised Cain and made noise.

Thank you to everyone who wrote an op-ed or a letter to an editor.

Thanks to all who worked so hard that people with ALS will now be counted.

Now, let's use the clues and finally figure out this $%^&^(*(# disease!

Monday, September 22, 2008

Communication from ALS Association re Veterans with ALS

Following is a communication from the ALS Association:

It's Official!!!
VA to Grant Benefits to All Veterans with ALS

We did it! Tomorrow, September 23, the Veterans Administration will publish regulations officially establishing ALS as a service connected disease! Effective immediately, all veterans with ALS will now have access to the highest level of VA benefits without having to prove that their disease was caused by service in the military. This is a tremendous victory for all veterans and is the culmination of years of work by The Association, our VA Issue Team and veterans across the country. It is clear that our outreach - testifying before Congress, partnering with the VA, advancing research to identify the connections between ALS and military service and educating the public about this issue - have paid off. The Association has championed legislation (H.R. 5454) that would have established ALS as a service connected disease. However, thanks to our efforts at Advocacy Day and throughout the year, this legislation no longer is needed! ALL Veterans with ALS Eligible for Benefits This new policy means that ALL veterans with ALS will receive the benefits they need, deserve and have earned. Importantly, it is broad in scope and applies to all veterans diagnosed with ALS regardless of when or where they served and regardless of when they were diagnosed with the disease following service in the military. A summary of the regulation can be found
here. The text of the regulation is available here.
Tomorrow and in the coming days, The ALS Association will post additional information about the regulation, including answers to frequently asked questions, an overview of benefits available to veterans with ALS, as well as guidance veterans can use to obtain service connected veterans benefits.The ALS Association would like to thank VA Secretary James Peake, Congressman Henry Brown (R-SC) and Senator Lindsey Graham (R-SC) for their efforts to work with us and the ALS community in support of veterans across the country. We also would like to thank all veterans with ALS whose outreach to Congress has helped make this important benefit possible.Additional information will be available on our website on September 23. If you have any questions, please do not hesitate to contact the Advocacy Department at
advocacy@alsa-national.org.

Veterans Affairs - Documenation for ALS Presumptive Service Connection

http://www.federalregister.gov/OFRUpload/OFRData/2008-21998_PI.pdf

Senate vs. Soaps on Tuesday

The saga of S.3297 and what legislation will be freed of the Coburn hold continues until Tuesday morning.

Fire Up CSpan2!

Breaking news... Senator Reid started things moving on some bills in the Coburn Omnibus package this afternoon.

Oprah's child predator and two other bills were pulled out of the omnibus and passed by unanimous consent.

More may happen this evening with the ALS Registry Act and some other bills left in the package. Senator Reid is awaiting the arrival of Coburn back in Washington (around 7 pm EDT).

If you don't have cable television, you can access CSpan2 live online. This could be a lot more interesting than Monday Night Football!

Friday, September 19, 2008

The American Legion Is On The Case

The American Legion has set up web tools to support the ALS Registry Act via S.3297!

Here is the link to their website...
http://capwiz.com/legion/home/

Please forward this information to any U.S. military veterans you know, and ask them to forward it to church groups, community organizations, clubs, friends, family...

Thanks, American Legion. Your engagement will help many people feel motivated to be involved.

Deju Vu - Let's Have A Different Ending This Time

Over 800 Americans with ALS have died since that July 28 Senate vote not to proceed with voting on S. 3297, the package of bills that contains the ALS Registry Act (and other bipartisan legislation that is important to ordinary Americans).

There are also over 800 newly diagnosed people with ALS facing a big, nasty ALS trip with their families.

If the same vote comes up next week (and we hope it does), we need 60 Senators to vote to move ahead with S. 3297. We need 60. We hear that the Democrats rule the Senate, but there are only 49 of them. There are 49 Republicans. There are 2 independents. We need some of each. We need for the Democrats who were with us on July 28 to stay with us. We need the Republicans who were with us on July 28 to stay with us and to bring some of their friends along.

Please email your Senators even if you have every confidence that they will be with us again. We need for them to show up to vote for S. 3297 and to convince their peers to do likewise.

Communication from ALS Association

Following is a communication from the ALS Association:

Urgent Registry Update

Thanks to everyone for contacting their Senators in support of S. 3297 and the ALS Registry Act. Our supporters in the Senate who have asked us to activate the ALS community are reporting that your outreach is being heard on Capitol Hill! We want to give you the latest update on what is a very fluid situation. At this time, the Senate will not be voting on S. 3297 today. However, it's possible that a vote onS. 3297 and the ALS Registry Act could occur at any time over the coming days, including early next week. Senators are in the process of determining how they will proceed on a wide range of issues, such as the financial crisis, before Congress adjourns for the November elections, which could be as soon as next Friday, September 26. Therefore, the schedule is in flux and can change in just a matter of hours. Nevertheless, it's important that our message already is being heard on the Hill.

Given the rapidly changing schedule, we want to make sure that we do not miss any opportunity to pass S. 3297 and the ALS Registry Act this year. So your outreach today and over the next week is still critical. Keep up the great work! Letters you can send to your Senators will continue to be available on the
Advocacy Action Center of our website here, http://capwiz.com/alsa/home/.

We will keep you updated on the latest news. Since the Senate may act at any time next week, it may not be possible to provide significant advance notice. So again please keep an eye out for our Action Alerts.Your outreach is making a difference!

Thursday, September 18, 2008

Urgent Action Item from ALS Association

Following is a communication from the ALS Association:

ALS Registry Vote Possible Friday!

As early as Friday, September 19, the Senate may hold a critical vote on S. 3297, the Advancing America's Priorities Act, which includes the ALS Registry Act. This may be the first of potentially several votes on S. 3297. However, Friday's vote likely will determine whether the Senate passes the ALS Registry Act this year!

Therefore, please contact your Senators immediately and tell your friends, family, colleagues - and everyone you know - to do so as well. Urge your Senators to vote YES on S. 3297. Even if you already have contacted your Senators this week, your outreach is still needed. We want to fill Senator's inboxes and make it clear that they must pass the ALS Registry Act this year. People with ALS don't have time to wait.

Letters you can personalize and send to your Senators are available in the
Advocacy Action Center of our website, here: http://capwiz.com/alsa/home/. If you don't know the names of your Senators, don't worry. The Advocacy Action Center automatically will identify them for you and enable you to contact them directly from the site.

ALS Association, Key Senators Meet with Senator Coburn

Over the past few days Senator Harry Reid (D-NV) and our supporters in Congress once again have reached out to Senator Tom Coburn (R-OK) in a last ditch effort to convince him to release his hold on the ALS Registry Act and S. 3297. In fact, just a few hours ago, The ALS Association joined Senator Lisa Murkowski (R-AK) for a face to face meeting with Senator Coburn. Senator Murkowski shared the story of her cousin whose husband is living with ALS and once again urged Senator Coburn to join us in providing hope and help to thousands of Americans fighting this horrific disease. Unfortunately, Senator Coburn continues oppose this bill. And that's why it's so important that you contact your Senators TODAY!

Don't Be Fooled

As the Senate prepares to vote on S. 3297, we anticipate that some may try to muddy the waters by raising issues such as energy, the cost of the legislation, and the financial crisis - some of the same issues that were raised when the Senate voted on S. 3297 in July. Tell your Senators not to be fooled by these tactics. They are just excuses for voting against people with ALS. Tell your Senators that their vote will demonstrate whether they support their constituents with ALS or whether they support Senator Coburn. And make sure you let them know that you'll be watching how they vote!

So again, please contact your Senators NOW! Together, we can pass the ALS Registry Act this year!
If you have any questions or would like information or assistance, please contact the Advocacy Department at
advocacy@alsa-national.org. Thank you!

One Last Chance To Save Our Investments

No, this won't help with the tanking stock market, but it can help with the time and money and effort that many have invested in getting an ALS Registry at the CDC.

If we do nothing, then the Senate won't see a need to mess with S.3297 and all of those trips to Washington and appointments in district offices and emails are down the drain. We lose everything and have to start from scratch in 2009.

A few of us remember the first talk of an ALS registry at the advocacy conferences back in the early part of the decade. There was finally ALS Registry Act legislation introduced in 2005, and for two years we worked on that and it went poof when it wasn't passed in two years. We started over with the ALS Registry Act of 2007, and today that legislation has overwhelmingly passed the House and would have been passed easily by the Senate a year ago had it not been for one Senator who single-handedly stopped it.

How many dollars have been invested in trips to Washington and communications and time off work to get the legislation this far?

An even more important investment is the time and energy of people with ALS who have exerted great efforts to be heard. Many of them who worked on the ALS Registry Act of 2005 are no longer with us. Many more have given a big slice of the time they have left to improve the lot of others by working to get the current ALS Registry legislation passed.

The investment has both a dollar price and a priceless cost of vitality of people with ALS. When they overdo it getting to legislators' offices, they don't bounce back. They literally have invested precious pieces of their lives.

We all need to make one more simple investment today and email our Senators. If we don't, we lose our complete stake in the ALS Registry Act and the Fed won't be there to bail us out.

Wednesday, September 17, 2008

Communication from ALS Association - Action Item

Following is from the ALS Association, Washington, DC, office:

Let's Pass the ALS Registry Act

With just a few weeks remaining before Congress adjourns for the fall elections, the time has come for the Senate to vote on S. 3297 and pass the ALS Registry Act. We anticipate that the Senate may hold a series of votes on S. 3297 at any time from now until the end of the month so it is absolutely critical that you reach out to your Senators TODAY. This may be our last chance to pass the ALS Registry Act this year and take the next steps in creating a national ALS patient registry.

Thanks to your continued outreach, we are now just five votes short of the 60 we need to pass S. 3297! So please go to the
Advocacy Action Center of our website and tell your Senators not to leave town until they pass this critical legislation. Let them know that people with ALS cannot afford to wait until next year. Let them know that politics should not come before patients' lives and that arguments that it costs too much are just excuses (the bill is an authorization and does not appropriate a single dollar!). And let them know you will be watching how they vote. Let's finish the job and enact the ALS Registry Act this year!

In addition to grassroots efforts, The ALS Association also has engaged in other advocacy efforts here in Washington. We helped to organize a coalition of more than 140 different organizations who recently sent a
letter to the Senate in support of S. 3297. Moreover, Oprah Winfrey has helped generate support for S. 3297 during her daytime talk show by requesting viewers urge Congress to support one of the bills included in S. 3297. These combined efforts, along with your grassroots outreach, are sending a loud and clear message that hundreds of organizations representing millions of Americans are in this fight together. We want the Senate to pass S. 3297 this year. So again, please contact the Senate today!

Finally, as you reach out to the Senate, we also want to emphasize how important it is for you to support S. 3297 and not advocate for the ALS Registry Act to be considered as a separate piece of legislation. Our supporters in the Senate have included the ALS Registry Act as part of S. 3297 in order to pass the bill this year. And it likely is the only way this can be accomplished, for there simply is not enough time remaining in this year's session to pass the ALS Registry Act as a stand-alone bill. In fact, if we do not unite behind S. 3297, Senator Tom Coburn will succeed in his more than two year quest to kill the ALS Registry Act. We can't let that happen. People with ALS can't afford to wait any longer.

Contact your Senators TODAY!

If you have any questions or would like assistance reaching out to your Senators, please contact the Advocacy Department at
advocacy@alsa-national.org.

Tuesday, September 16, 2008

Lights, Cameras, Coburn -- He Sure Likes Oprah's Spotlight!

Oprah's campaign to pass legislation against child predators didn't mention the Coburn hold tactic. It didn't mention Coburn. It merely stated that the legislation had been stalled by partisan politics and needed to be passed.

Coburn couldn't pass up the chance to get on his high horse with a piece of legislation that is bound to attract media with Oprah's current engagement.

Coburn's September 15 statement to Oprah's viewers.


“Oprah’s viewers deserve to know that Senate leaders have twice objected to passage of the bill she supports. Senate leaders have insisted that S. 1738, authored by Senator Joe Biden (D-DE) and endorsed by Senator Barack Obama (D-IL), only pass if it is included in a package of unrelated bills that addresses less vital concerns such as the interstate commerce of non-human primates. When I proposed de-linking the causes of protecting children and chimpanzees, Senate leaders objected,” Dr. Coburn said.


One of the bills in the "package of unrelated bills that addresses less vital concerns" is the ALS Registry Act.

Please take a moment today to email both of your Senators to remind them that the ALS Registry Act is a vital concern to the families of the 750+ people with ALS who have died since their vote not to vote on July 28. It is a vital concern to the 6000+ families dealing with ALS today. It is a vital concern to the hundreds of thousands of widows and widowers and orphans who have lost precious loved ones to a disease that kills today just as it killed Lou Gehrig in 1941.

We must speak up now. Oprah's millions of viewers are going to demand some action and not let Coburn speak for all Americans (or for all Republicans). Now is the time for our voices to join theirs to get the Senate to pass the ALS Registry Act!

The Coburn hold tactic was the reason the bills had to be packaged together in the first place. Ironic, isn't it. Perhaps Oprah will make him regret that he decided to step into this spotlight.

Saturday, September 13, 2008

Oprah Is About To Give Coburn A Lesson in Democracy

News reports indicate that Oprah's show on Monday the 15th will be dedicated to her campaign against child predators. The show will include an opportunity for viewers to change the law. Senate web servers are being geared up for a barrage of emails from Oprah's viewers to demand passage of S. 1738 The Combating Child Exploitation Act

http://www.opencongress.org/bill/110-s1738/show

S. 1738 is one of the pieces of legislation that has been blocked by the Coburn hold. It would appear that it may be freed after one of the most influential women in the media tells millions of viewers about the situation.

http://www.foxnews.com/story/0,2933,421721,00.html

It appears that Oprah isn't asking for the S. 3297 Advancing America's Priorities Act (which includes The Combating Child Exploitation Act along with the ALS Registry Act and a few other bipartisan pieces of legislation that Coburn decided to hold). Unfortunately for ALS, it looks like her viewers will be focused only on passing S. 1738 and not on passing the package.

Oh, that Oprah might ask for the S. 3297 package and get The Combating Child Exploitation Act and The ALS Registry Act and the other non-controversial, bipartisan items in that package that got the Coburn hold.

In any case, this is a wonderful opportunity for the world to learn about the Coburn tactic, especially against legislation that will help those in our country who need help the most.

Go, Oprah, and please tell the world that there is an ALS Registry Act that is gasping for passage before this session ends, too.

Thursday, September 11, 2008

On The Importance Of Voting and ALS Advocacy

ALS advocacy is an interesting, frustrating effort. Some in our government can make positive things happen while others seem to like gridlock. There is only one way to fix our government so that the do-ers aren't constantly stymied by the gridlock-ers... vote, and remember those who have been helpful to the ALS cause and understand the problem of Lou Gehrig's Disease when you make your choices.

Following is from a friend to the cause and is worth a look --
One advantage of being a night owl is that you get to hear firsthand a compelling challenge to the American citizenry – cloaked in Scottish humor from late night TV’s Craig Ferguson.

Trust me: this monologue by Craig Ferguson on the Late Late Show is worth 8 ½ minutes of your time. If you can’t spare that much time, please at least listen to the last 30 seconds.

http://www.youtube.com/watch?v=pdRVQ4xwwmQ

Tuesday, September 9, 2008

Senate Seats Up For Election on November 4


Click on image to enlarge or print.

Circle Your Wagons for the Next Congress

If we're unable to get the Senate to vote on The Advancing America's Priorities Act or to get Coburn to release The ALS Registry Act from his talons' hold before the end of 2008, we might as well start lining up some friends to the cause when we have to start from scratch in the next Congress. Please check out Politico's list of hotly contested races below. If you are from one of those states and one of those people has been a friend to the ALS cause in the past, please consider voting for him or her. If one of those people has not been helpful, please consider the alternative. We need for our legislators to know that there are career consequences to having deaf ears when it comes to ALS. Here are some close races where every hanging chad will be important.

From Politico --

2008's Hot House, Senate races
By: Tim Grieve September 9, 2008 06:42 AM EST

Eight weeks from today, voters will elect 435 House members and 35 senators.

...

Below, Politico brings you the top races that could reshape the next Congress.
Illinois:
Mark Kirk vs. Dan Seals
Pennsylvania: Paul E. Kanjorski vs. Lou Barletta
California: Charlie Brown vs. Tom McClintock
New Mexico: Harry Teague vs. Ed Tinsley
New Jersey: Linda Stender vs. Leonard Lance
Florida: Tom Feeney vs. Suzanne Kosmas
North Carolina: Elizabeth Dole vs. Kay Hagan
New Hampshire: Carol Shea-Porter vs. Jeb Bradley
Mississippi: Ronnie Musgrove vs. Roger Wicker
Colorado: Betsy Markey vs. Marilyn Musgrave

Monday, September 8, 2008

Senate Agenda Or Lack Thereof

Please contact your Senators and let them know that it's important for America to gather some data to drill through to find a cure for ALS, too. The energy bickering and posturing are getting us nowhere (kind of like the infamous bridge). Our Senators need to know that we need for them either to vote on S. 3297 Advancing America's Priorities Act or to get Coburn to lift the hold on S. 1382 the ALS Registry Act! NOW. If they don't pass the act by the end of the year, we have to start all over again next year. That's government waste.
_________

From TheHill.com :

Reid warns Republicans against government shutdown
By J. Taylor Rushing
Posted: 09/08/08 04:09 PM [ET]
Senate Majority Leader Harry Reid (D-Nev.) cautioned Republicans Monday against forcing a government shutdown over expanded oil drilling while noting increased support for bipartisan energy legislation. As the Senate resumed business for the final three weeks of the 110th Congress, Reid cited 22 senators from both parties who now back the compromise package, which would allow four southeastern states to expand drilling and also calls for $84 billion in conservation and efficiency investments.

With no appropriations bills signed by President Bush, lawmakers’ chief task this month is to pass a stopgap measure to fund the federal government in the fiscal year beginning Oct. 1.Republicans are mulling whether to press the offshore oil drilling fight by blocking the funding resolution, which contains the congressional moratorium on such drilling. Reid reminded the GOP that its government shutdown led by former House Speaker Newt Gingrich (R-Ga.) during the Clinton administration was met with widespread public disapproval."We are not interested in any games being played [with the funding measure]," Reid said. "We simply want to make sure the government is allowed to function. There have been Republicans saying what they want to do is close down the government. I would hope that some of those people have read very recent history where Gingrich tried to do that and it didn't work out well for the Republicans and certainly didn't work out well for this country."Minority Leader Mitch McConnell (R-Ky.) urged the chamber to follow a busy three-week schedule, calling for alternative-energy tax measures, an Alternative Minimum Tax fix and expanded oil drilling proposals."I’m confident, after spending the past month away from Washington, that if we did little else these next few weeks but pass a serious response to high gas prices, fund the government and protect taxpayers, the American people would view these next few weeks as extremely productive," McConnell said. Reid also wants other businesses in front of the Senate. He made a pitch for the Department of Defense authorization measure that the chamber will take up Monday, as well as a second economic stimulus he hopes senators will take up before they are expected to adjourn, on Sept. 26.

Republicans have been blocking such measures in an attempt to force a debate on offshore drilling. "We want to get on the bill, we want to get the bill passed," Reid said. "This is not an opportunity for people to vent their frustration on all the issues that are floating around this country."

Since Our Minds Have Moved To Football This Weekend

One of the horrible ironies of ALS is the number of athletes and active, fit people who are diagnosed. Since the NFL kicked off over the weekend, perhaps we can tweak some sportswriters to raise the visibility of how often ALS hits professional (and college and high school) football stars. Here's a list from ALScounts --

What do these former NFL stars have in common?
Eric Scroggins
O.J. Brigance
Glenn Montgomery
Pete Duranko
Peter Demmerle
Steve Smith
Tony Proudfoot (CFL)
Bob Waters
Orlando Thomas
Wally Hilgenberg
Yes, it's ALS. Does this seem strange to anyone else?
Is ALS a fringe benefit of a football career?

Friday, September 5, 2008

Senate - Gridlock or Change?

It's time for the Senate to get back to work. Will they see an opportunity to accomplish some things, or will they permit the legislative branch to be a political wedge to affect the election?

From Politico, September 4...

http://www.politico.com/blogs/thecrypt/0908/Senate_Dems_to_force_equal_pay_vote_on_McCain.html

Senate Dems to force equal pay vote on McCain

Democrats have hammered Sen. John McCain (R-Ariz.) this summer over his vote against legislation pushing equal pay for women and men. The Lilly Ledbetter Fair Pay Act will get a second act in September, as Democrats seek to remind voters that McCain opposed it, according to an e-mail from the Democratic Senate message center. It lists "[e]qual pay legislation" as among the issues the Senate will take up in September.

We hope this message finds you enjoying the last days of the August recess. When the Senate goes back into session next week, we begin a busy work period with much legislative business to complete before the November elections. Below is a summary of what Sen. Reid plans to work on during this period; as always, this summary is subject to change. Defense Authorization. On Monday there will be a cloture vote on the motion to proceed to the defense authorization bill, S. 3001. The Senate convenes at 3:00pm on Monday and the cloture vote is scheduled for 5:50pm. You will recall that Senate Republicans blocked proceeding to the defense authorization bill before the August break – cloture was rejected by a vote of 51-39 on July 31. Energy. The Stop Excessive Energy Speculation Act, S. 3268, is the pending business before the Senate. If cloture is not invoked on the motion to proceed to the defense authorization bill, the Senate could resume debate of this measure. Sen. Reid has scheduled an energy summit involving senators from both parties to take place on Friday, September 12. The goal is to discuss bipartisan solutions to the country’s energy crisis. Additionally, the “Gang of 16” has indicated that it is drafting legislation to address supply, conservation, alternatives and taxes. Sen. Bingaman, chairman of the energy committee, also is drafting legislation on the same subjects. No decisions have been made, but either of these measures or others could be considered as amendments to, or in lieu of, the pending speculation bill. We understand that the House may consider energy legislation next week as well. Economic Stimulus. The House is expected to assemble a second economic stimulus bill for consideration in September. Sen. Reid also plans to bring up a stimulus bill for debate this month, though details are still being worked out. Tax Extenders. Sen. Reid will continue to use every means necessary to pass a tax-extenders bill. Senate Republicans blocked cloture on motions to proceed to both S. 3335 and H.R. 6049 before the break, but Sen. Reid and Sen. Baucus remain committed to re-extending incentives that will spur investment in the renewable-energy sector, among other important policies. Appropriations bills. Defense, military construction, homeland security, foreign operations and other appropriations bills also remain on the to-do list. Continuing Resolution to fund government. Sen. Reid expects to have the Senate consider a continuing resolution to ensure continued operations of the government into next year. This measure will include funding for any agencies not otherwise funded through the regular appropriations process. Additionally, there is other unfinished business that Sen. Reid will work to consider: * Equal pay legislation * Advancing America’s Priorities Act, S. 3297 (the Coburn bill); * Warm in Winter and Cool in Summer Act, S. 3186 (the LIHEAP bill); * Americans with Disabilities Act Restoration Act; and * Media Shield

The House’s targeted adjournment date remains September 26. This date also remains the goal for Sen. Reid, but observers might reasonably conclude that finishing the above legislative business before September 26 will be difficult and will require significant cooperation from Senate Republicans

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Lou Gehrig's Last Home Run

In this morning's Wall Street Journal, the wonderful Gehrig biographer, Jonathan Eig, writes of Lou Gehrig's last home run 70 years ago. It's a baseball and Gehrig student's fondest memory of Yankee Stadium. Lou played the entire 1938 season and the Yankees swept the World Series. It wasn't until the 1939 season that Lou took himself out of the lineup and gave us his farewell.

For those who have any interest in ALS or baseball, it's worth picking up a copy of the paper this morning. Jonathan Eig has a wonderful understanding of a ballplayer he never met in person and the haunting disease that stole him from us. He gives insight into ALS at a time when baseball and Yankee Stadium will be in the news. It's an excellent awareness tool. How can a disease like this go on for 70 years? An excerpt...
http://online.wsj.com/article/SB122057123966901511.html
That year, Gehrig played with advanced symptoms of a brutal and deadly disease, amyotrophic lateral sclerosis, known today as Lou Gehrig's disease. He not only appeared in every one of the Yankees' 157 regular-season games, he played brilliantly, hitting .295, with 29 homers, 114 runs batted in, a .410 on-base average, and a .523 slugging percentage. Alex Rodriguez this year has produced roughly equivalent numbers.

Throughout the entire season, Gehrig knew something was wrong with his body; he just didn't know what. He arrived in St. Petersburg for spring training after filming a singing-cowboy movie called "Rawhide" (check it out on Netflix; it's a hoot). He entered the season as the highest-paid player in the game, with a one-year contract for $39,000, and saying that he thought his body, always the game's most solid, ought to hold at least a few more years. He was 34 and had played for 13 years without missing a game. His first swings of spring were feeble. He popped a few high and dribbled some into the dirt before his hands began to ache. "I'll get the feel of this thing in a hurry," he told a reporter that day. He never did, though. All that spring he felt clumsy. He tripped. He dropped easy throws. He developed blisters and bone bruises on his hands, and began taping foam to the bottom of
his bat handle to reduce the pain. In hindsight, all of these are likely symptoms of ALS, a progressive neurodegenerative disease that attacks the nerve cells in the brain and spinal cord, shutting down messages from the brain to the body's muscles. Most victims survive only two or three years after diagnosis. Gehrig's muscles were withering away. As he tried to compensate, he probably squeezed the bat more tightly than usual, causing the blisters and bruises.

Most people with ALS don't know they have it for the first year. At this moment, there are about 5,000 people in the United States walking around without a clue. A year or so from now, when they are diagnosed, they will look back and say, "Oh, yeah, so that's why I had trouble with the belt on my son's car seat." Gehrig was no different -- except that he was a professional athlete who was being watched and criticized every day. Nevertheless, he kept going. What else could he do? He assumed the malfunctions were a result of age, or a virus, or perhaps his imagination. By late April, reporters were commenting that Gehrig seemed to have lost strength. Maybe he should have been working out instead of cavorting all winter in Hollywood, sportswriters sniped. His manager, Joe McCarthy, moved him out of the cleanup spot in the batting order into the sixth position.

Though his body was growing weaker by the day, Gehrig was so well-conditioned and so gifted an athlete that he managed to adapt. He started slapping at the ball instead of trying to crush it, and his batting average climbed. He put in an order with Hillerich & Bradsby Co. for some lighter bats, which helped him regain some of his power.

Thursday, September 4, 2008

Make ALS An Issue!

Finally, somebody put ALS on the table as a voter's election issue.

Seattle Times

We voters should be talking about the issues that are important to us. When people are dying from ALS, ALS is as important as the price of gas and bread! We need to go public with ALS being an issue that candidates need to address.