Sunday, August 31, 2008

Take A Chance, Take A Chance...

Which candidates can be big enough (and smart enough) to see an unusual opportunity in the next couple of weeks?

Candidates are busy distinguishing themselves from their opponents. That's code for trying to sling the zingers that will make the other party look bad. It's also one of the root causes for all the polarization that we have in Washington, and the polarization leads to the gridlock, and the gridlock keeps America from accomplishing some very simple good things.

The ALS Registry Act became a victim of a far-right verbal war against pork barrel spending. A single Senator used it as a step-stool to his bully pulpit that distinguished him not only from the other party, but also from many in his own party. Our legislative process has a procedural rule that he used (or abused depending on your viewpoint) to control the agenda.

There are three influential Senators running to lead our nation for the next four years. Two of them (McCain and Biden), one R and one D, are co-sponsors of the ALS Registry Act. Seventy-five more of their peers also co-sponsored it.

This is an exquisite opportunity for two influential Senators to show us what all that talk about reaching across the aisle really means.... now. Senator McCain and Senator Biden, now is the time to step forward and get something done between your bus tours. The Advancing America's Priorities Act now holds our hope of finally having an ALS registry for Americans who are killed by this mystery disease. Now is the time. Before the election, show us what you can do in a bipartisan way. The current gridlock wastes something much more precious than pork. It wastes lives. Yes, this is a sanctity-of-life issue.

Senators, talk is cheap. Show us what great Senators can do. Show us what all the bipartisan rhetoric can mean in real life. Energize the electorate.

Thursday, August 28, 2008

Harry I am with you!

No matter how old and wise I pretend to be, I cannot pass up an opportunity to be a little crass.

I came across this photo of Senate Majority Lead Harry Reid the other day and opined that it was taken in response to Sen. Dr. Coburn's contribution to passing a package of legislation to support the ALS Registry, the Reeves Paralysis Fund to name only two.

I could not help but thank Senator Reid for reflecting my thoughts about the good Senator Doctor Coburn.

Thursday, August 21, 2008

What Happened to my GOP

"Compassionate Conservative." "Fiscal Conservative." "Social Conservative." "The Grand Old Party / The GOP." Growing up I heard those terms all too much and I search today for their value. My Dad was a GOP guy and so very proud of it. My Dad also died of ALS, Lou Gehrig's disease and that was 20 years ago. Nothing has changed with ALS, there still is no cure and the deaths are on the rise. As my Dad reads the news today I'm sure he is disappointed with his "Grand Old Party." I'm sure he would say, "why the lies, why the debt, why the mess, why all the suffering."
In 2004 my Dad witnessed another disappointment. That was the year, at age 54, I was diagnosed with ALS. That was the year I found there was no help for me as well. I was shocked to learn that there were ALS groups to help my wife and I adjust. That was the kind of help my Mom and our family didn't have. Different than the year my Dad died, we found support groups, care specialist, better therapies, but still no cure.
In 2004, I learned of the ALS Association that was advocating a new bill in congress that would start to collect data on the occurrences of ALS. They called it the ALS Registry Act to help researchers and even though my Dad could not be counted, I could. I took up the cause with great passion and in just three years something good for ALS was about to happen. ALS patients, some 30,000 at last, would have a little hope in breaking down the barrier of an ALS cure.
In December 2007 our hopes were halted by a GOP guy, a "Compassionate Conservative Doctor," by the name of Sen. Tom Coburn of Oklahoma. Sen. Coburn had put S.1382 on "Hold" and no one but he could ever release it. Coping with ALS is the worst of all diseases but being part of a campaign to punish the U.S. for spending is not the compassion my Dad once believed in. I am positive my Dad is very disappointed at the spending the GOP has been part of and the selfish action of this one mans barricade against hope. I am also positive my Dad holds himself responsible for my ALS. Now my children live each day in fear of Familial ALS.
One last chance, on July 28, 2008, the Senate voted to bring up a vote on a package of 34 of the 90 bills being held by Sen. Coburn. Yes, S. 3297, Advancing Americas Priorities was a cloture vote that was 8 Ayes short and failed with 52 Ayes to 40 GOP Nays. 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. To us, time is our enemy and has a whole different meaning when you have under five years to live.
I'm sure my Dad is disappointed and wonders what has happened to his GOP.

Wednesday, August 20, 2008

Doing What We Do Best?

In yesterday's Wall Street Journal there was a revealing article regarding the 110th Congress. WSJ

Barring a burst of legislative activity after Labor Day, this group of 535 men and women will have accomplished a rare feat. In two decades of record keeping, no sitting Congress has passed fewer public laws at this point in the session -- 294 so far -- than this one. That's not to say they've been idle. On the flip side, no Congress in the same 20 years has been so prolific when it comes to proposing resolutions -- more than 1,900, according to a tally by the nonpartisan Taxpayers for Common Sense.

With the mostly symbolic measures, Congress has saluted such milestones as the Idaho Potato Commission's 70th anniversary and recognized soil as an "essential natural resource." As legislation on gasoline prices, tax fixes and predatory lending languish, Congress has designated May 5-9 as National Substitute Teacher Recognition Week, and set July 28 as the Day of the American Cowboy.

Ok, so we know that the House and Senate are good at passing back-slapping, fluffy resolutions. Let's work with that since they've not been able to pass an ALS Registry Act. How about having a resolution passed that declares ALS a Terrorist of a Disease? Who could argue with that? Please hold that thought.

In this morning's Washington Post, there is an article on the data being gathered and retained on U.S. citizens' land border crossings. It's amazing. The Department of Homeland Security has an integrated source of information that includes all of the car, truck, bus, and train passengers moving between the U.S. and Canada or Mexico. Washington Post

The federal government has been using its system of border checkpoints to greatly expand a database on travelers entering the country by collecting information on all U.S. citizens crossing by land, compiling data that will be stored for 15 years and may be used in criminal and intelligence investigations.

Do you see the possibilities here? Pile our patients into vans and let's head to Canada or Mexico for a day, and make sure that the border crossing folks note that the people have the official Terrorist of a Disease.

OK, Senators. Everything in life is difficult for people with ALS. Clearly our country sees value in gathering and retaining data in order to find threats in our midst. Clearly our Senate can pass legislation, albeit much of it is of the fluffy resolution variety.

Please sit down and do something serious in September and pass the ALS Registry Act as part of the Advancing America's Priorities Act. It will even help with gas prices since our thousands of people with ALS won't be wasting fuel crossing the borders in order to be entered into a database.

Sunday, August 17, 2008

Everybody Talks About It. Nobody Does Anything About It.

Did you notice Senator Reid's comments on the floor of the Senate when he was trying to win the vote to vote on the Advancing America's Priorities Act S. 3297? Lou Gehrig's Disease was front and center as a reason to pass that act. The package includes legislation on paralysis, strokes, vision, maternal medicine, etc., but ALS -- Lou Gehrig's Disease -- was the poster health issue in that package. Its "awful" factor sits atop a long list of other serious health issues.

Did you notice Senator Obama's comments during the Rick Warren interviews this weekend? When the very predictable topic of stem cell research came up, Senator Obama specifically cited Lou Gehrig's Disease as one of the awful diseases that could be benefit from stem cells. Why do Senators seem to know that Lou Gehrig's Disease is one that America needs to deal with, yet they've not done something simple like passing the ALS Registry Act to expedite the search for clues?

Senator Obama was not one of the 79 co-sponsors of the ALS Registry Act. Perhaps he could have explained that when Reverend Warren asked him about a time he went against the grain.

Neither Senator Obama nor Senator McCain bothered to vote on the day the Senate voted not to vote on the Advancing America's Priorities Act. So much for leadership.

Senators talk about Lou Gehrig's Disease, but what do they do about it? Talk's cheap. Show us what you do.

Monday, August 11, 2008

Who Can't Sleep At Night?

Are any of the Senators who voted to stay on energy and not vote on the Advancing America's Priorities Act losing any sleep? Since they failed to deliver either, they should be.

Is the Senator who sucker-punched the ALS Registry Act losing any sleep? Since he used it for his own fiscal superhero schtick and didn't bother to discuss it in his own committee, he should be.

People with ALS lose a lot of sleep. It has to do with breathing and the inability to do simple things like tossing and turning that these Senators can take for granted.

p.s. Sorry to put two pictures in this blog entry, but it's hard to find a picture that includes both Senate leadership and Coburn. Go figure.

Friday, August 8, 2008

2008/08/08 - The Day Eyes Are On China

As you watch the Olympic coverage, think about Mao. Regardless of what you think of him, he carried incredible power and influence. Even one of the world's most powerful men couldn't escape the fate of motor neuron disease.

He died 32 years ago. Surely his fate would have been different today, you say? Nope.

Wednesday, August 6, 2008

Sen. Coburn speaks to OKC Rotary Club

The new Senate crusader against Jurassic Pork has become a spokesperson for just about any topic. On the war Sen. Coburn states; "In Iraq we have seen phenomenal change in less than 12 months over there. The fact that they changed tactics and strategy and it has been highly successful and you see that in the economics, you see that in fatalities, you see that in statistics, you see it in terms of freedom opening up, you see it in casualties, even in the traffic. In every way the surge has been successful. We have had a see change in the last fifteen months."

Thank you Sen. Coburn, it is refreshing to know that after $500 billion US dollars we finally see something.

Make no mistake Sen. Coburn's rise in the polls was made larger on the senate floor, July 28th, 4:00 PM. That day was the showdown in the senate created by Sen. Reid. on a motion for a cloture vote on S. 3297 which contained the ALS Registry Act S.1382 on "Hold" by Sen. Coburn. His followers the last two weeks have praised him for the spanking he give Sen. Reid. That day the 52-40 vote put ALS, (Lou Gehrig's disease) further away from possible research and the hopes for any cure.

What worries me, is while the country thinks we have a crusader against pork, we really have someone willing to block any topic and in this case he has aided to block ALS without debate. For example, Don Lambro of the Washington Times this week described that S. 3297 was designed to contain some yums yums. He accused Sen. Reid of adding bills that contained some good things, proposals to help victims of paralysis and ALS / Lou Gehrig's disease and to fight drug use. "These sweeteners were added to make the lard go down a little easier". Mr. Lambro failed to mention that Sen. Reid was the one who introduced the ALS Registry Act not this year but in 2004. Mr. Lambro, ALS is far from sweet.

Mr. Lambro explained all the worst bills with dollar amounts but failed again to explain the seriousness of the ALS Registry Act. Maybe I shouldn't blame Mr. Lambro, he obviously is not familiar with ALS and ALS patients are not equipped with individual press people or an organization willing to take on the senate crusader and tell the public the real facts.

By the end of the August vacation, ALS will have claimed another 525 lives.

Coburn Fights Tears Regarding Military

From Michael McNutt at

U.S. Sen. Tom Coburn, fighting back tears Tuesday when asked about U.S. troops in Iraq, called the success they achieved the past year "nothing short of phenomenal”...

Perhaps Senator Coburn should make the effort to meet a few veterans with ALS (they're not hard to find, unfortunately). That should bring him to tears, too.

Sunday, August 3, 2008

A funny thing happened on the way to the Senate

A funny thing happened to the ALS registry on its way to becoming a law. It ran into politics. If it weren’t so pathetically sad, it would be laughable, but I am slowly learning that anything connected to ALS is hard. Well, that’s not true; the people I have met through my various ALS associations are probably the easiest people to deal with. I’m sure it’s because everyone with ALS or caregivers of people with ALS have their priorities suddenly aimed in the right direction…whatever it takes to make this disease easier, that’s what needs to be done.

The ALS registry would do that. Everyone who deals with ALS on a daily basis knows that. It would help to direct research; it would help to point to trends that might lead to treatment and cures. It wouldn’t fund research, but just give scientist a clue as to where to look and where to begin searching. Senator Coburn stopped all that…in so many ways. He voted out of the Senate H.E.L.P. committee only to place a hold on S. 1382 on the Senate floor. He got more press that way. Bills are held every day in committee, but no press. When you hold a bill on the Senate floor, and pork barrel spending, it gets press. But it wasn’t just the ALS registry he held; many other good and decent bills suffered the fate of the “Coburn hold”. His brand of politics is unlike anything the Senate has seen before.

After 7 months of hold limbo land, suddenly ALS patients, caregivers and advocates had hope again. The registry was being bundled into S. 3297….a compilation of bills that had strong bipartisan support and that was a shoe in to pass…or so everyone connected with ALS thought. But then, politics reared its ugly head.

On Monday, July 28th, S.3297 was brought up to a cloture vote. 60 yes were needed for cloture. An yes vote for cloture would bring the bill to the Senate floor for debate, and then a vote to pass it, and then …on it’s way to the President. Wooo-hooo!

However, politics. The Senate was in the middle of a bitter, bipartisan debate about energy…gas prices, energy market speculation, and to drill or not to drill for oil and gas.

That bitter debate got in the way of doing what was right for many many Americans. S.3297 did not get its 60 votes that were needed and the bill was not brought to the Senate floor for a vote. It wasn’t because S. 3297 didn’t have full bipartisan support…it was because of politics. The politics of the Republicans wanting certain provisions in the energy bill. The politics of the Democrats not wanting those provisions in the energy bill. The politics of the Senate steeped in age old tradition of debate, and time enforced rules.

What was lost on that hopeful Monday was the fine art of negotiation and compromise, which has also been an age old tradition of the Senate. Furthermore, it was lost for the rest of the week, and the Senate adjourned without an energy bill and without passing S. 3297.

At this point in my life, I don’t care where we get our energy from; oil, gas, wind, soybean, corn or sage grass. That may sound glib, but it is the truth. You see for me it is simple, the thing that matters most to me right now is not energy or even politics, it is ALS. ALS is first and foremost in my life. And for now, energy and politics are standing in the way of potentially bringing the ALS registry to fruition, and potentially bringing a cure to those with ALS.

So, just as living with ALS, I jump into another world where everything seems hard. Politics. When the Senate returns in September, I want the fine art of negotiations to replace the art of politics. I will spend my “August Recess” contacting my Senators and urging them to “negotiate” instead of “politic”. Maybe then, once compromise is reached, S. 3297 will make it to the Senate floor, be voted on and passed. Then the only thing funny we might hear about the ALS registry act will be the glorious sound of PALS and CALS laughing and rejoicing. With passage of the registry act, after 67 years of “ALS status quo” things could change. PALS and their CALS negotiate and compromise with this disease every day. In September, it’s time for the Senate to do the same...negotiate and compromise. Negotiate and Compromise.