transitive verb 1: to hit hard : 2: to plod (one's way) perseveringly especially against difficulty intransitive verb 1: to plod heavily : 2: to work hard and steadily
Welcome to an ALS Log (Slog), a chronicle meant to help us pay attention to ALS.
The world didn't need just another blog, but it can use everyone's help to be relentless as we slog away to ensure that the data and clues from every patient with ALS are counted and retained so that the cause and cure can be found.
Thursday, May 7, 2009 - Let's Start A National Resolve To Rid The World Of ALS
Advocates are packing their bags and heading to Washington for the annual Advocacy Day.
It's time for some results.
Thursday, May 7, 2009 - Time Flies While Patients Die
ALScounts is two years old today.
There is still no known cause for ALS. There is still no cure. There is still no comprehensive registry of ALS cases.
Next week ALScounts will be on Capitol Hill once again asking for continued $upport for the ALS Registry so that it may move beyond pilot projects and actually count every nose. We will also ask for funding for government research. If we taxpayers can invest in our failing institutions, then surely we can find the national resolve to invest in our citizens' failing neurons. It's a matter of life and death.
In the two years since the ALScounts website has been around, there have been well over 10,000 funerals for Americans who have died from ALS. People who never even heard of ALS two years ago have died from it.
As a noted ALS researcher recently said, "ALS is not an uncurable disease. It is an underfunded disease." It should be a national priority to stop ALS before ALScounts has another anniversary.
Monday, May 4, 2009 - Will We All Count Together -- 1, 2, 3... ?
The stimulus package included a lot of stimulus for electronic medical records. The investment is intended to be an important basis of streamlining our expensive, inefficient healthcare delivery system.
It would seem that the concept of an ALS registry could be a key beneficiary of this investment. We need to be paying attention.
Sunday, May 3, 2009 - Don't Forget To Be Seen In DC
If you're preparing to converge on DC next week to advocate on behalf of the ALS cause, please try to make the cause visible. As you help ALS get inside people's heads, you help people realize that this is a problem that needs some attention. At the right is a link to some simple signs that may tweak your imagination. You are welcome to use anything there. Print your faves and take a few to DC.
Don't forget that if someone wants to take your picture (and in Washington, the politicians love their pictures), capture the cause in the picture. Hold up a sign.
Saturday, February 28, 2009 - How About This For A Pay-It-Forward Conversation Starter?
Picture this. Seven hundred ALS advocates gather in Washington, DC, in May. Each is handed 15 stickers -- one to wear, and 14 to stick on people in the hotel, people in restaurants, people on street corners, people in the halls of Congress, people in the Metro, people driving buses, people watching a candlelight vigil, people at Arlington National Cemetery, people everywhere.
Advocates with some conversation-starter tools can truly educate thousands who live in a city where much needs to be done to help cure ALS.
700*15=10,500 people in our nation's capital to serve as walking billboards for ALS advocacy. Up the ante to 20 stickers each and do the arithmetic.
How many tens of thousands of people working in Washington have seen those people in wheelchairs and their families tooling around DC in past years without knowing that is Lou Gehrig's Disease?
Friday, February 13, 2009 - What Is Wrong With This Picture?
There are actually two things wrong with this picture.
1. It doesn't have an upward trend that would indicate that America senses an urgency to solving the ALS problem. 2. If we plotted it with the total NIH budget line, we wouldn't be able to see the lowly ALS line.
Friday, February 13, 2009 - How Do We Make Some Stimulus Trickle Down To Those Dying Motor Neurons?
The diagram at the left (give it a click) was in this morning's WSJ and gives us a great visual of the stimulus package. Notice that the NIH gets a nice $8.5 billion chunk for disease research.
If the numbers that ALScounts found on past NIH funding are correct, and if ALS research could get its traditional paper-thin pie slice of the NIH's $8.5 billion stimulus, could we be looking at $21,500,000 for ALS research? If we could get more than a paper-thin slice of the NIH stimulus pie, think of what might be done. It shouldn't be a hard case to make that if ALS research were funded to a degree to that would elicit success that it would be both an economic victory and a humanitarian victory.
Is that not what the stimulus concept is all about?
Tuesday, February 10, 2009 - Get Out Your Magnifying Glass, Pa. This Is One Tiny Slice Of Pie!
ALScounts has been reading some brochures on the amount of government funding being invested in ALS research. The numbers seem large, but it's always good to put government numbers in perspective. ALScounts charted the 2007 total NIH budget of $23.7 billion with the NINDS allocation within NIH of $1.5 billion along with the ALS research budget within NINDS of $.040 billion. Yes, that's $40 million, but let's put it perspective.
That ALS slice of the pie is less than two tenths of one percent of the NIH budget.
On the chart, there is a green slice of the pie for ALS. Yes, look for the green slice. You can just barely see it if you have really good eyes (and high resolution display). If you don't have good eyes, you can be assured that your malady probably got a bigger piece of the pie and a cure is on the way.
Go ahead and click on the chart and it will enlarge... but it's still hard to see that tiny slice of pie.
Sunday, January 25, 2009 - On Whose Watch Will ALS Be Cured?
Andrew Johnson -- ALS Is Identified by Dr. Charcot
Ulysses S. Grant Rutherford B. Hayes James A. Garfield Chester A. Arthur Grover Cleveland Benjamin Harrison Grover Cleveland William McKinley Theodore Roosevelt William H. Taft Woodrow WIlson Warren G. Harding Calvin Coolidge Herbert Hoover
Franklin D. Roosevelt -- Lou Gehrig Is Diagnosed, Gives His Farewell, and Dies
Harry S. Truman Dwight D. Eisenhower John F. Kennedy Lyndon B. Johnson Richard M. Nixon Gerald R. Ford Jimmy Carter Ronald Reagan George H.W. Bush William J. Clinton George W. Bush
Barack H. Obama -- ???
In a four-year term, around 25,000 Americans die needlessly from ALS.
Another 25,000+ are diagnosed and will probably die in the next four-year term.
Thursday, January 8, 2009 - ALScounts Is Back. Counting Can't Commence Without $ome Fund$!
Passage of the ALS Registry Act was a huge hurdle, but there are more hurdles in our path. That was an authorization act. Ok, we're authorized. Now we need some appropriations in order for the count of noses to begin. In the meantime people continue to die from ALS and their clues are lost.
We have a new HHS Secretary-elect who has a huge job ahead. He seems to be committed to better information being a key to more efficient healthcare delivery. We need to get his ear that better information is needed to cure a nasty and expensive (in many ways) disease.
We can't quit until the noses are actually counted and the information is put to use! We have permission.
Words from Senator Lisa Murkowski (R-AK) who helped negotiate with Senator Tom Coburn (R-OK) to break his hold on the ALS Registry Act --
"It really does feel good to know that we have done something positive to help people and to provide hope for those who are afflicted with this awful disease.
The praise rightly belongs ALS advocates who have been dogged on this issue. They didn't take no for an answer, nor should they have. Government can't do everything, we can't legislate a cure for ALS, but we can help facilitate process that may lead to the cure. Its just a shame it took us so long. BUT we did it! So break out the champagne!"
Friday, September 27, 2008 - It Has Been A Happy Week!
On Tuesday, Senator Reid led the Senate to a voice consent vote to pass the ALS Registry Act. A deal had been brokered with Senator Coburn who had stubbornly held it, and the Senate unanimously consented to pass the bill. It went back to the House (since Coburn had negotiated a few changes to it), the House passed it quickly, and now it's on to President Bush's desk for a signature.
Finally we have a better fighting chance to look at data to see if there might be a preventable environmental trigger to ALS. Smart scientists can get facts on benchmarks and perhaps can focus their scarce resources to the most promising areas.
Thanks to all who worked so hard to make this finally happen. There is still much to do, but this was a huge victory. Now we need to shout from the rooftops that we are finally going to be able to count noses!
Monday, September 22, 2008 - It's The Bottom of the 11th Inning and We're A Run Down (Or Maybe Just Run Down)
This is the week that appears our last chance to have the Senate move ahead on S.3297 which contains the ALS Registry Act. If we don't hit it out of the Senate ballpark this week, we have to start all over again next year.
Over the weekend there was a lot on the news that reminds us of ALS and the importance of the week ahead. The last game was played in Yankee Stadium and we saw lots of clips of Lou's farewell speech. ALScounts is sure that many baseball fans who saw that speech this weekend will learn in the next few months that they, too, have Lou Gehrig's Disease. Their first reaction will probably be that surely medical science has a cure for them by now. They will be crushed to learn that medical science can help them with fancier expensive medical equipment than Lou had, but their outlook is much the same. It's terminal.
Over the weekend we also saw a lot of the talking heads on the news shows analyzing the financial crisis. It was refreshing to see figures very knowledgeable in financial matters such as Senator Dodd or Mayor Bloomberg say that this isn't the time to be micromanaging Secretary Paulson and Mr. Bernanke. They are dealing with a crisis and need to be able to work with the poor cards they were dealt and try to fix the system as best they can.
We have people in important elected positions warning us if the dangers of micromanaging a complex technical situation that needs some swift and decisive action.
We have one person in an important elected position who is single-handedly trying to micromanage the information gathering for a cure for ALS. Senator Coburn isn't a neurologist. He is not an epidemiologist. He's not exactly a neuroscience equivalent to the financial minds of Chris Dodd or Michael Bloomberg. He has decided that it's best for our goverment and her people not to have an ALS Registry.
The Italians have a wonderful word for, "Enough, already," -- Basta!
Basta, Senator Coburn. Please stop micromanaging and give people who are in an ALS crisis the same courtesy that you give our economy when it is in crisis.
If other Senators might be reading ALScounts' words, please do a decent thing and move ahead with S.3297. Imagine how disrespectful it feels for people dying from ALS to know that their data will be buried with them and won't be used to help cure the next person to get this disease. America is not a better place when micromanaged by Senator Coburn.
Thursday, September 11, 2008 -- If Only Motor Neurons Were Tires
Back in 2000 some people started to notice that a lot of popular Bridgestone/Firestone tires were failing. Was it a trend or just a coincidence? When people started trying to connect the dots, they found 193 accidents with 21 fatalities involved. That's a problem worth solving. Tires were recalled. Consumers were outraged. The government became engaged. The attorneys gathered. Ultimately 62 fatalities were attributed to the tires and 6.1 million tires were recalled. There was also an outcry to gather some data so that other such future auto safety problems might be caught before another 62 precious lives would be lost.
Here is today's AP story -- U.S. Unveils Car Accident Database ASSOCIATED PRESS September 11, 2008 WASHINGTON -- The U.S. government unveiled a public database that will allow consumers to look up the number of alleged deaths, injuries and cases of property damage involving passenger vehicles.
Consumer groups have sought the information, which was part of legislation passed by Congress following the massive recall of Firestone tires in 2000. The law was devised to help the government quickly detect potential trends in car accidents. It required manufacturers to provide data on complaints of deaths, injuries, property damage and warranty claims. The "early warning" data reports can be found at: www.safercar.gov.
In July, a federal appeals court ruling barred the government from withholding key data reported by manufacturers.
Why, oh, why, has it been so difficult to get the wheel rolling on a registry for ALS data so that we might see if there is a pattern or a way to prevent 100 times the annual carnage of those faulty tires?
Monday, September 8, 2008 -- Are You Ready For Some Football ALS?
What do these former NFL stars have in common?
Tony Proudfoot (CFL)
Yes, it's ALS. Does this seem strange to anyone else?
Thursday, September 4, 2008 -- OK, Senators, Time To Get Back To Work!
Recess is over. The conventions are finished. Don't forget that you're still on the taxpayers' payroll and there is still some unfinished business regarding ALS.
Since your July 28 vote not to vote on the Advancing America's Priorities Act, there have been around 600 funerals for people who have died from ALS. That's a lot of pain and grief and widows and widowers and orphans. The clues that their medical and environmental histories carried were buried with those victims of ALS.
The are at least as many people who have been to the doctor and have found out that their tripping or slurred speech is caused by Lou Gehrig's Disease. They went home from the doctors stunned and have been Googling and reading and searching for something to try so that they might not meet Lou Gehrig's fate. They're totally frustrated. They're not finding anything. Incredible as it sounds, they're doing the same searching (albeit with better tools) that Eleanor and Lou Gehrig did in 1939 with the same empty results.
Senators, if ALScounts' arithmetic is correct, taxpayers pay you $165,200 each year for your work. That's $635 per business day (counting that nice August recess). It's time to get back to work and get an ALS Registry to a vote in the Advancing America's Priorities Act. If you're not going to work on it, then perhaps you'll consider donating $635 per day to ALS research.
There's a difference between being a Senator and being a great Senator. It's time for some great Senators to step forward and stop the bickering and posturing and just get an ALS Registry done. See the picture at the right. Nobody will argue that there are some great Senators in that picture, including one who died from Amyotrophic Lateral Sclerosis.
Friday, August 22, 2008 - What In The World Are Those Signs Saying, Katie?
Senator Coburn's office has released with excitement the news that he will be speaking to the Republican National Convention in Minneapolis on the evening of Tuesday, September 2. He will speak on government waste and pork and earmarks -- the magic words that he has learned will catapult him into the spotlight.
He is also the Senator who has single-handedly prevented the ALS Registry Act with 79 Senate co-sponsors from coming to a vote.
It's difficult for the networks to keep viewers' interest through the long evenings of endless convention speeches, especially when the nominees are already determined. The cameras would love something interesting to find during Coburn's speech, perhaps. How about some people in the hall amidst all of the patriotic signs holding up two simple, black and white signs -- K in one hand and ALS in the other. Katie and Charlie and Brian could actually explain what that means to viewers while Coburn goes on about government waste and pork.
If anybody can get some of these signs into the convention hall, you will have the thanks of people with ALS everywhere. It could be a very polite, silent, and effective way of getting the word out about ALS and the need for a registry.
It's all ready to download at the left and take to FedEx Kinko's or Staples to print on card stock.
Tuesday, August 19, 2008 - The Problem Is Of Olympic Proportions
The American and Chinese Olympic athletes have put on a marvelous show in earning 149 medals as of this morning.
Since the games began just over a week ago, 160+ Americans have died from ALS.
After the closing ceremony when the medal count has concluded, amyotrophic lateral sclerosis count will continue.
Friday, August 1, 2008 - Dear Senators,
Here is your ALS Registry awareness opportunity. Please consider having a poster made up that will tell those who pass by your office how many lives we have lost since the vote of last Monday. It demonstrates the urgency of getting an ALS Registry sooner than later.
There is a pdf that you can print off on letter paper in your office and just tape a new page on the big poster to update the counts from time to time. The as-of dates are in the lower right corners of the pages.
The file for the blue poster should be printable at FedEx Kinko's, Staples, etc. in a poster size. ALScounts will be glad to assist with the cost and files if that will help get one of these posters outside your office door. ALScounts' email link is on the About page.
Thank you very much.
ALScounts knows that a bipartisan effort can get a registry passed before you run out of update sheets. It's a matter of life and death. We should not be wasting time and lives and clues.
Thursday, July 31, 2008, 11:40 PM - 79 Hours After the Vote Not To Deal With ALS Registry Legislation
We could have had all of the arguing and voting finished by now. Do we have the energy legislation that was so important to deal with instead of the ALS Registry... nope. What do we have to show for this week? There have been over 50 funerals for people with ALS since that fateful Monday afternoon. Over fifty Americans were told by their physicians that they have Lou Gehrig's Disease. None of the clues of these 100 precious citizens has been kept so that we might learn.
Since July 28, 2008 4:40 PM EDT
20+ U.S. Citizens' Lives (and Clues) Lost
Tuesday, July 29, 2008, 11:40 PM - 31 Hours After the Vote Not To Deal With ALS Registry Legislation
By now Senator Coburn could have pontificated for 31 hours and we would have been closer to a vote on the ALS Registry. Instead the Senators are talking about gas prices and a lot of other topics. Talk about putting people with ALS over a barrel. In the meantime, lives and clues continue to slip away.
Since July 28, 2008 4:40 PM EDT
10+ U.S. Citizens' Lives (and Clues) Lost
Tuesday, July 29, 2008 - Our Senate Let Us Down
ALScounts hasn't been writing here much lately. That's because the writing efforts have been going to elected officials and advocates in hopes of finally getting the ALS Registry Act to a vote.
It's a long story about procedural holds and Senators posturing and bickering.
The bottom line is that at 4:40 p.m. yesterday a vote was taken that would have allowed a package of bills including the ALS Registry Act to be discussed and voted upon. The nays won. The Senate opted not to pick up this package of bills that included a database for information about people with ALS. Instead the bickering over gas prices will proceed today.
The clock ticks for everyone with ALS. Since that vote and 7:40 this morning as ALScounts writes, at least 10 people have died from ALS (and their clues were not retained to help the cause be figured out). At least 10 new American citizens got the bad news that they have ALS. The number will be 15+ by this afternoon. When will we stop this terrible revolving door?
Friday, July 11, 2008 - Add One BIG Cosponsor to the ALS Registry Act!
A few days ago ALScounts was waiting for a flight and noticed a gentleman sitting a few rows away in a gate area reading a paper and enjoying a morning cup of coffee. It was Senator Richard Lugar.
Evidently this advocacy opportunity was meant to be.
ALScounts approached him with a "Strike Out ALS" wristband and intended only to ask for him to take the wristband and consider adding his name to the cosponsors of the ALS Registry Act. He could not have been more gracious. He asked questions about ALS and the number of Hoosiers who might be affected. He was interested in the mysterious military connection. He made a note to himself, thanked me for my advocacy, and we shook hands and boarded our flight. The gentleman traveling with him assured me that he would get with his health assistant, Liz, with whom we left the materials on ALS last May.
Liz has just informed ALScounts that Senator Lugar is now a Co-sponsor of the ALS Registry Act and that their office has contacted Senator Reid's office and hopes that the logjam on the legislation caused by one Senator (from Oklahoma) will soon be broken. ALScounts would think that the support of a Senator of the stature of Senator Lugar will make a difference. He has contributed much to world peace and nuclear disarmament in his public service career. Now we have him with us on another equally challenging project -- ALS.
Thank you, Senator Lugar.
Friday, July 4, 2008 -- The Last Time We Saw Number 4 In The Yankee Pinstripes
Sixty-nine years ago today Lou Gehrig gave his farewell. He knew the diagnosis. Every day since at least 15 others have received the diagnosis. Every day.
Don't we Americans have a responsibility to finally stop the carnage? It's going to take more than we've been doing for the last sixty-nine years.
Thursday, June 19, 2008 - A Birthday Letter to Lou
Remember five years ago when we celebrated your 100th birthday with lots of awareness events and pins and special baseball cards? I had such hopes that some bright young scientist would pick up a spark of insight and find the cause and cure. No such luck. Things are much the same here as they were five years ago when it comes to ALS. Shoot, things are much the same as they were 69 years ago when you and Eleanor were dealing with it.
I'm sure you've met Tim Russert by now. Quite a baseball fan, eh? He loved the Yankees and the Nationals. The Nationals, you ask? It's a long story, but I'm pretty sure the ballplayers would rather be called "Nationals" than "Senators." Tim Russert was, like you, the absolute best at what he did. He worked hard as you did. Every Sunday he entertained us and made us a little smarter about what was going on around us. He went to work last Friday and died unexpectedly. No warning. Wham... gone. Since last Friday we have learned a lot in the media about asymptomatic heart disease and plaque and sudden heart attack death. I'm sure that lives will be saved with all of the awareness that Tim Russert's death caused. I'm sure that some wonderful heart disease research will be funded as a result of his death. It scares us all when somebody at the top of his game goes like that. Unfortunately ALS hit you before the media were looking for stories to fill up 24/7 airtime... and unfortunately ALS doesn't seem to scare us enough.
Remember how knee injuries used to finish careers? One ligament tear and the swing was never the same. One ligament tear and baserunning turned into basehobbling. Tiger Woods is to golf as you were to baseball. He has a knee injury and took himself out of the lineup yesterday. He'll be back. Medical science has progressed wonderfully when it comes to knees. The injuries are still difficult, but the surgeries and recoveries that physicians can enable today are amazing. Tiger will be back. Too bad that some of that smart science hasn't figured out how to restore motor neurons after all these years.
Please realize that we're so grateful that you gave the disease with the impossible name a handle that people would remember. We are grateful that you had a career that to this day gives ALS its best visibility. We're sorry that we've not done more with all the opportunities we've had to rid the earth of this disease.
Thanks for listening to my rambling. God bless you and our loved ones who were taken from us by ALS.
Saturday, June 7, 2008 - There Are Dreams and There Are Nightmares
According to the NCAA website, a male high school athlete has 3 in 10,000 odds of being drafted into the NBA. That's why we encourage our youth who are chasing that dream to study hard and stay in school and have an alternative way of making a living.
So a male high school athlete has a 1 in 3,333 chance of achieving the NBA dream and a 1 in 1,000 chance of living the ALS nightmare. That's just not fair.
Monday, June 2, 2008 - Houston, We Have A Problem!
Please click on that image to the left. It will pop open in a new window. Look at it for a moment.
It's no wonder that we've not found a drug to cure ALS in the last 134 years since Charcot discovered ALS. Think about the time spans required for clinical trial phases involving patient volunteers. Each phase of a clinical trial requires more time than most of them have left on this earth.
Add up those years for all phases and multiply by at least 6000 deaths per year and it should make us all feel more than a little strange about the unintended consequences of a drug approval process intended to protect people.
Monday, June 2, 2008 - It's An Important Day In History
Sixty-seven years ago today, Lou Gehrig died. We didn't see much of him after his farewell speech on July 4, 1939. One of the greatest athletes of all time playing a wildly popular sport in a huge media market was cut down by a mysterious, fatal disease in less than two years. Lou Gehrig died at age 37.
If you read the stories of Eleanor Gehrig caring for Lou in his illness, the accounts are all too familiar to the ALS caregivers of today. We've not really come a long way, baby.
Thank God for Lou Gehrig. Were it not for him, the disease wouldn't even have a name that anybody would remember.
Tuesday, May 13, Late Afternoon - Packet Drop-offs
We were unable to get appointments with Congressman Mike Pence's office or with Congressman Baron Hill's office. We dropped off information packets to both of those offices in hopes that their healthcare legislative assistants will review the legislative proposals.
Keep in mind that this was the last appointment in a very long day, especially for the 14-year old in our group.
Congressman Ellsworth met with us in person along with his staffer Brian, and both could not have been nicer. They listened to our requests for funding and for H.R. 5454 and the Congressman is completely supportive. He is also a genuinely nice person and suggested that a 14-year-old sit behind his big desk for a photo op with a ceremonial pen. I'm sure that the student trip report will be a hit with that photo at the end... and the young man certainly deserves some smiles after what ALS has cost him.
Tuesday, May 13, 2008, 4 p.m. - Congressman Joe Donnelly's Office
As we waited to meet with Lauren, the Congressman emerged from his office to hand some papers to a staff member. ALScounts is usually very polite except when it comes to ALS. Congressman Donnelly could not have been more gracious when ALScounts ambushed him to put a Strike Out ALS sticker on him and to shake his hand. He said that he certainly knew about ALS since his wife lost a relative to it, so just to let Lauren know what we needed and he would be supportive. We had our meeting with Lauren and she asked pertinent questions about ALS and we have every confidence that Congressman Donnelly will be supportive of our requests. Joel, the Congressman's Chief-of-Staff also spotted us in the office and remembered that we had spoken last year. This is another hospitable and caring staff, and we appreciate their support. It's good to have a Double Domer in Congress!
Tuesday, May 13, 2008, 3 p.m. - Senator Evan Bayh's Office
We were a little apprehensive since our old contact at Senator Bayh's office was no longer there, but Sarah was every bit as supportive and understanding as her predecessor. Senator Bayh has been consistently helpful with our requests and we appreciated his early cosponsorship of the ALS Registry Act. When Sarah learned of the Coburn hold, she offered to make a call to Coburn's office. That is clearly a tactic that other legislators do not appreciate, especially when it can hold up progress in healthcare. Sarah went through our requests for funding for the Registry and for DOD research and we have every confidence that Senator Bayh will give both his thoughtful consideration. We were also joined in our meeting by Chris, so now we have two contacts in Senator Bayh's office who understand ALS.
Tuesday, May 13, 2008, 2 p.m. - Congressman Dan Burton's Office
We met with Brian as we have in the past many years. Brian indicated that Congressman Burton will want to know Congressman Buyer's (Veterans' Affairs ranking member) position on H.R. 5454. Since we did not have a commitment from Congressman Buyer's office, Brian said that he will make contact. We hope that both will be supportive. Brian understands the need for funding for the Registry and for DOD research and we hope that Congressman Burton will support those initiatives.
Tuesday, May 13, 2008, 11:45 a.m. - Congressman Mark Souder's Office
Congressman Souder is one of the early cosponsors of H.R.5454, so it was a pleasure to thank Brett for the Congressman's support. This is the first Hoosier cosponsor of this legislation. This district has a very active community of ALS patients and advocates and it is terrific that they they have a Representative who is willing to act on their behalf.
We spoke with Brett about funding for the ALS Registry. When the Coburn hold was mentioned, Brett offered to call Coburn's office. He indicated that many in Congress have issues and differences with the CDC, but he felt that holding the registry was not a good solution to those issues.
We appreciate Congressman Souder's and Brett's support.
Tuesday, May 13, 2008, 11:00 a.m. - Congressman Pete Visclosky's Office
We met with Catherine again this year and she's a great listener and understands the issues. Congressman Visclosky is on the Appropriations Committee and the Defense Appropriations Subcommittee. We are grateful for Catherine taking the time to talk with us to understand the importance of the DOD research for getting to the bottom of ALS, especially ALS in the military. We hope that in spite of all of the people pulling on him for support that Congressman Visclosky will remember the importance of ALS and the devastating costs of not dealing with it.
May 13, 2008, 10:30 a.m. - Congressman Steve Buyer's Office
We had been scheduled to meet with Allison (with whom we met last year) but instead had a hallway meeting with Mike who would take our requests to Allison who would take our requests to Congressman Buyer. We gave Mike a quick ALS-101 and fortunately he is a baseball fan and we had his interest. Congressman Buyer is the ranking Republican on the Veterans' Affairs Committee, and we hope that H.R. 5454 might resonate with him. In the past we have had excellent meetings with one of his staff members who had a personal knowledge of ALS, but unfortunately she has retired. Congressman Buyer did not cosponsor the ALS Registry Act but did vote Aye on its passage. We hope that Mike can carry the message of the importance of H.R. 5454 and of the DOD funding for ALS research to our veterans who are finding a rotten fringe benefit of military service -- ALS.
Tuesday, May 13, 2008, 9:45 a.m. - Congressman Andre Carson's Office
We were pleased to find that after the election of Andre Carson to fill his late grandmother's seat in Congress, Sara would still be our contact person on health issues. Sara has some personal connections to ALS and simply "gets it" when it comes to the issues surrounding ALS. Sara assured us that Congressman Carson would be as supportive as Julia had been and we are counting on his support for HR 5454 to establish ALS as a service-related disability for all veterans as well as support for continuing registry funding and DOD research funding. Sara also offered to call a friend in Coburn's office in hopes of helping to break up the logjam that his hold has caused on the ALS Registry Act in the Senate.
There is no more hospitable office than Congressman Carson's. We were introduced to many staff members, all of whom proudly sported Strike Out ALS stickers... and I have no doubt that they kept them on long after we left the office.
Tuesday, May 13, 2008, 9 a.m. - Senator Richard Lugar's Office
We met with Liz again this year. We can always count on Liz to understand the issues and listen to us. A fourteen-year-old's story on losing his father to ALS will be remembered by all of us in Senator Lugar's conference room. Liz was encouraging that the pilot registry projects are much more likely to give us traction than not taking the pilot approach. We asked for Senator Lugar to add his name to the ALS Registry Act as a cosponsor, especially since a Republican of his stature would certainly have some influence on the Coburn hold. Liz indicated that they would discuss it and she also said that she would call Coburn's office to see exactly what their problem is with the registry.
Senator Lugar has always been supportive of the DOD funding for ALS research and we are grateful for that.
Tuesday, May 13, 2008, Very Early Morning - We're Ready to Converge on DC
We have our stickers ready and our state's contingent will consist of our ALSA chapter executive director and a board member/ALS widow who is also bringing their 14-year-old son. We are to rendevous at our first appointment - Senator Lugar's office.
Friday, May 9, 2008 -- Dear Voters, Watch This Space
On Tuesday, May 13, people with ALS, caregivers, and people who have lost loved ones to ALS will swarm through the Senate and Congressional office buildings to talk to our elected officials about the national ALS problem, the need to get the ALS Registry Act passed, and the need for research funding, especially for our veterans. These are not the lobbyists in Gucci loafers who meet at Charlie Palmer's for lunch. These are the people who face the world's obstacles from their wheelchairs and have a frosty Ensure for lunch. This is grass-roots citizenship.
ALScounts will post reports.
Thursday, May 8, 2008 - Even Lieutenant Columbo Needs Clues
People who are around ALS tend to turn into amateur detectives constantly cooking up ideas on what the environmental trigger might be that sets off ALS in people. Last night as ALScounts was dozing, the idea of all of the security devices that we pass through in airports and offices and banks came to mind. One wonders. There is probably no connection, but one wonders. Then through the miracle of dozing in front of a television, ALScounts thought, "Where is Lieutenant Columbo when you need him? He could have figured this out."
Lieutenant Columbo needed a secure crime scene in order to observe the clues. Unfortunately we don't secure the crime scene when ALS has robbed someone of his or her life. We don't retain the clues. Even Lieutenant Columbo couldn't figure out the perp without a secure crime scene.
Thursday, May 8, 2008 addendum (or "addendumb" as a colleague used to say when the original document missed something obvious)...
If only the reruns last night when ALScounts was dozing had been of "Murder, She Wrote." Now we're talking about some obvious photo ops with the new ALSA celebrity spokesperson! PALS in Washington, DC, for Advocacy Day wearing crime scene tape (that in itself is a good attention-grabber/conversation-starter/press-magnet). ...Jessica Fletcher joining them in photos. Even the greatest detectives can't uncover the murderer unless the crime scene is secured and the clues are gathered. Surely the press would love that.
They sell crime scene tape at most hardware stores, or I'm sure your local police would give you some if you told them the reason. Tie a yellow ribbon round the old wheelchair! It's a crime that people die from ALS. Secure the crime scene and gather the clues.
Wednesday, May 7, 2008 - ALS Can Take All The Fun Out Of A Birthday!
One year ago today ALScounts.com was launched. The idea was to bring some visibility to the abysmal lack of hard data regarding a killer disease. The goal was generate some understanding, especially among the movers and shakers -- those who can make things like an inventory of people with ALS happen.
Not much has changed in a year except that we've generated at least $41 million for the funeral business (at least 5500 funerals * $7500 per funeral). Our economy has lost at least $117 million in wages or productivity for people taking time off work trying to assist relatives with ALS (at least 30,000 patients * 5 helper hours per week * 52 weeks * $15 per hour). That $117 mil is in addition to the lost jobs for newly diagnosed patients... perhaps well over $100 million in wages (5500 new diagnoses not working perhaps an average of six months of the year at an average of $40,000 per person?).
Those dollars are pretty crass to talk about when you think of the human tragedy that this disease causes for lively, vibrant, productive citizens and their loved ones. Children are turned into caregivers and then orphaned. Spouses learn too much about the meaning of "for worse" in their wedding vows. People with ALS are called upon to demonstrate huge amounts of courage amidst a healthcare system that can't won't even save their data to help prevent this fate for the next person.
ALScounts won't quit until we healthy folks do the right and decent thing and treat ALS as a serious public health problem that needs a solution. Without information, the odds of finding that solution are slim. Please, movers and shakers, now is the time!
Wednesday, April 30, 2008 - The Wayback Machine Is Very Revealing
ALScounts was curious as to the numbers about ALS being bandied about 10 years ago. Thanks to www.archive.org we can go back to 1998 and look at the ALS Association's website from the olden days.
The web pages of today are prettier, but the content is remarkably the same. Ten years pass and they still talk about estimates of 30,000 patients and 5,000 annual deaths.
The population of the U.S. (per the Census Bureau) has grown from under 270 million in 1998 to an estimated 304 million today. Static patient counts would indicate that ALS is becoming less prevalent. Ha!
The numbers are stale and questionable and we still have nobody counting noses of patients with ALS. If we don't start counting and retaining data, nothing will change in the next ten years. That's not acceptable. That's outrageous. That's a lot of funerals (exact number unknown).
Saturday, April 26, 2008 - Pick Your Elevator Rides Carefully
Otis Elevators are estimated to move the equivalent of the world's population once every nine days ( Otis ). Wow. 6.6 billion person-rides over just nine days. Nine days = 77.760 seconds. Bear with ALScounts and you'll see where we're going with this.
Let's do some ALS arithmetic. Since we don't have a precise count of PALS, let's use the "30,000 Americans with ALS" as a theoretical starting point. 30,000 PALS / 300,000,000 Americans ==> .0001 of our people have ALS. If the USA is a model of the world, then perhaps .0001 might represent the share of the world's population with ALS.
.0001 * 77,760 seconds = 7.776 seconds. Look at your watch. Envision all of the crowded Otis elevators throughout the world - In Hong Kong, in Paris, in Bahrain, in London, in New York, in Copenhagen, in Boston, in Mexico City, in Buenos Aires, in Los Angeles, in Fargo, in Montreal, in Capetown, in Bombay, in Beijing, in Washington, DC (where the elevator doors at the right can be found),... Count off eight seconds. That's a lot of people with ALS, isn't it?
There are a lot of "if"s in our arithmetic. It's odd that United Technologies is a lot more sure about the numbers of people who ride on their Otis elevators than the CDC and the WHO are on the number of people who have the bottoms drop out of their worlds because of ALS.
Saturday, April 19. 2008 - Just Show Up!
ALScounts' city is having its Race for the Cure this morning. The news media have given it great coverage. It's a wonderful annual gathering. 40,000 are expected. That's a far cry from the 1,000 people who gathered around 15 years ago. How has it grown so? ALScounts thinks it has something to do with the spirit of sisterhood that started the concept, and the fact that people just show up. People with any connection to breast cancer just show up. The fact that there are a considerable number of survivors helps a lot, but even those who have lost loved ones years ago to breast cancer still show up... in memory and in the spirit of helping others.
So is it impossible that our community's Walk to Defeat ALS might grow in numbers like the Race for the Cure? We're good at having a supportive gathering of 1,000 people who rally around people they know with ALS, but we're not very good at getting those many thousands who have lost loved ones in the past to ALS to just show up. We don't have courageous survivors to encourage, but we all have the memory of our loved ones and should have the spirit of helping others.
If anybody should just show up, it is we who have seen ALS and who have been robbed of loved ones. It's easy. We have no wheelchairs and breathing apparati to deal with. We just show up and walk and make ALS the topic of the day in all the media.
ALScounts put some numbers together. If we could just get people to show up, we could hit 40,000 participants within 15 years. When you show up in numbers like that, you get attention, and ALS needs attention! You don't need to be fixated on fundraising. Just show up and do what you can. If 40,000 people gather, the funds will follow.
Saturday, April 5, 2008 - Everybody Talks About It...
It's tornado season in some parts of the country. We've not figured out how to prevent them, but we sure have found ways to try to minimize their toll on human life.
The NOAA site has some interesting tornado statistics.
We can see that in a couple of really bad years back in the 1920s (when Lou Gehrig was hitting his stride as a Yankee), tornadoes killed almost 800 people. In a few years when tornado activity spiked, there were 400-500 fatalities. In a more typical year there are no more than several hundred people killed by tornadoes. It's nice that somebody decided to keep the statistics. There is a chart on the NOAA site that also shows that when you normalize those fatalities against the significantly increased U.S. population, there is a clear decline in the fatality rate from tornadoes. Let's score one for American ingenuity and investment in simple things like notification systems and education programs on how to take effective cover from a storm and significant media engagement in tornado safety.
A tornado is not statistically likely to hit our homes or do us harm, yet we understand the damage that one can do and we take precautions and invest in some societal measures to protect ourselves. ALS is a much more likely disaster to hit any one of us, yet we've made no progress since the 1920s in reducing the risk or changing the outcome.
Thursday, March 20, 2008 - March Madness, Anyone?
The Seattle Times gave the odds for the lower seeds in the men's NCAA hoops tournament on Monday. Every player on those teams knows that it's possible to win a couple of games and get on a roll and end up as a contender in the Final Four. Every fan who has seen "Hoosiers" knows that it's quite possible for David to knock off Golaith in these tournaments.
When ALScounts looked at the odds, it became apparent that the quite possible feat of winning the NCAA tournament is less likely than the odds of getting ALS for every player on these teams. That should scare us all.
Georgia 1000-1 San Diego 1000-1 Boise St. 5000-1 Cornell 5000-1 Fullerton St. 5000-1 Oral Roberts 5000-1 Siena 5000-1 Winthrop 5000-1 AmericanU. 9999-1 Austin Peay 9999-1 Belmont 9999-1 Coppin St. 9999-1 Mount St. Mary's 9999-1 MVSU 9999-1 Portland St. 9999-1
Tuesday, March 18, 2008 - Give Another "A" Disease an "A!"
This morning the Alzheimer's Association ran full-page ads in the New York Times, the Washington Post, and the Wall Street Journal demanding that the presidential contenders have a plan for Alzheimer's.
Just in case our ALS not-for-profits would like to emulate this compelling ad, ALScounts has marked up a few edits. Click the image on the right if you're interested in bringing ALS into healthcare policy discussions, too.
Thursday, March 13, 2008 - Why Do We Luv To Confront Some Problems More Than Others?
Frequent fliers have been disappointed to learn of the gaffes in the Southwest fleet maintenance. Thirty-eight 737s have been grounded until they are checked for cracks. The government and Southwest are throwing resources all over this problem.
Let's do the arithmetic. 38 planes * 137 passengers/plane = 5206 total passengers who would be lost if all of those planes were to fail in flight. That would be horrible. That would be a terrible tragedy. That would be intolerable. That would be unconscionable.
That would be fewer than the number of Americans who die each year from ALS.
Ding, ding, ding?
Saturday, March 8, 2008 - If PALS Were Snowflakes, We Would Know More
ALScounts lives in an area where the weather forecasters have not had an accurate winter. Predicted blizzards have fizzled (not that ALScounts is complaining). Despite their forecasting failures, our weather experts are wonderful at telling us where the snow has fallen. On the radio I hear exactly where the highways are dangerous because of snow and which communities are digging out. They capture the history and the facts and inform us well on what happened, even though their predictions aren't always great. If you want to know the temperature in Fargo on June 1, 2007, you can find it.
Medical professionals aren't good at predicting where ALS will strike. It seems incomprehensible that they don't even capture the history and facts and inform the public as well as our weather experts. If you want to know the prevalence of ALS in Fargo on June 1, 2007, good luck.
Thursday, March 6, 2008 - Have We Missed The Boat On ALS Awareness?
This morning ALScounts read in the paper how corporate America gets some important messages out to our students by supplying curriculum materials to schools. They can provide a valuable service that helps both teachers and their own missions.
For many years the pharmaceutical industry has provided high quality continuing education materials for healthcare professionals. Everyone is aware that they supply these materials in therapeutic areas where they have a business presence, but the materials are not infomercials. They can provide important continuing education to professionals who need and like to learn.
Financial services companies have caught on to the public need to understand saving and retirement planning and the public desire to do that in a private setting, thus the influx of excellent financial models that have become available for individuals. The days of the sales seminar at the Holiday Inn have given way to better tools in an on-demand environment provided by companies that have a vested interest in well-informed consumers.
So... why are we still promoting ALS awareness from the mountaintops with brochures and big annual meetings and anecdotal stories and flat websites rather than by educating the grass roots like corporate America?
There are huge opportunities for quality lesson plans and curriculum materials to be supplied to our schools. Think of the math lessons in the statistics. Think of the sports-related lessons in what happened to so many athletes. Think of the civics lessons in the difficulty of getting legislation passed. Think of the science lessons in the lab failures and promises related to ALS. There could even be some valuable lessons looking at ALS in the performing arts. Teachers love having access to quality materials and most of us never forget some of the things we learned in seventh-grade projects. How about planting some ALS understanding in tomorrow's scientists and legislators on the turf that corporate America knows works for its messages?
Our ALS message boards often mention the complete cluelessness of many healthcare professionals regarding how to approach and deal with a patient with ALS. These are the same healthcare professionals who learn all about glomerular filtration and staph aureus from those continuing education modules provided by the pharmaceutical industry. How about some quality continuing education materials on neck weakness in bulbar-onset ALS patients or oxygen implications in ALS? How about providing some education for healthcare professionals on the turf that corporate America knows works for its messages?
ALScounts thinks that it's time for ALS organizations and foundations to get on board.
Thursday, February 28, 2008 - All You Have To Do Is Put Your Mind To It
A few months ago we learned that an American spy satellite had malfunctioned and was making an uncontrolled trip back to earth. Our planet has so much empty space that the odds of it doing harm were miniscule; however, there is something about a crashing mass of stuff from space carrying a load of potentially toxic fuel that makes us really uncomfortable. Whatever the odds, who can't visualize the horrors of it hitting a city or an inhabited island or our own back yards? The idea to pulverize the satellite to prevent harm to Mother Earth and her inhabitants made many sleep better. America put its mind to launching a missile from a ship not just to hit the errant satellite, but to hit it in exactly in the fuel tank.
According to Time (Numbers, February 21), the cost of the missile launch was $60 million. There have been over 200 scientists working since January to modify the missile system to make it work for this situation.
So we live in a country that is capable of assessing a risk, albeit one with miniscule odds, and in less than two months come up with funding and talent to hit a threat the size of a Winnebago in space.
If only we applied the same resolve, funding, and talent to a threat that is much more likely to hit any of us than a disabled satellite - ALS.
Sunday, February 17, 2008 - What's Good For The Goose...
The concept is so simple. The power is huge. Ask people to observe and report birds where they are, and valuable information can be assembled on species and locations.
Nobody is spending zillions of dollars fishing through veterinary databases. Nobody is relying on an ivory tower to do the work. This is basic, grass-roots, proactive nose counting.
Wouldn't it be wonderful if we could get (with patients' permission, of course) physicians and wheelchair dealers and home healthcare professionals and pharmacies to report their flocks of PALS to a central clearing house. I'll bet we would find PALS collectively that we didn't realize were out there. It would simply be a matter of taking the time and effort for each to report what is in his or her "backyard." Most PALS would ask these folks to report that they passed through their backyards. Healthcare professionals are busy, so maybe some incentives would be needed for them to report their observations. The Audobon Society found help to count birds. Surely there is a foundation or agency that could help us organize The Great American PALS Count.
p.s. Here's my first report... Larry Bird's mother, Georgia Bird, died from ALS in late 1996.
Saturday, February 16, 2008 - This Could Be The Greatest Thing Since Sliced Bread!
The CDC site now has a feature called, "Wonder." It permits you to drill into many online datasets.
Much to ALSCounts' surprise, it was possible to drill into mortality data and find our friend, G12.2 Motor Neuron Disease (it's not obvious, but you'll find it if you look). That's where our people with ALS are buried... provided the clerk at the local health department knew that the ALS on the death certificate was really G12.2 Motor Neuron Disease.
ALSCounts just tried a couple of slices of the Wonder data. It's interesting. Some of the larger percentages of deaths are in much older categories than conventional thinking would lead us to believe. Is it because there is more ALS in those groups, or is it because they don't last long once they get ALS?
Give it a try and look at the data for some groups of people and start asking some questions...
Sunday, February 10, 2008 - There's Time, And There's ALS Time
Imagine being handed an hourglass that will be used to measure your remaining time on earth. The sands slip to the bottom chamber relentlessly. Some people are issued an hourglass with a really big opening for the passing sand. That's what ALS does. The rest of the world deals with normal time, and people with ALS watch as their sands flow like an avalanche.
When PALS deal with healthcare delivery, a scheduler's four-week wait for an appointment isn't acceptable. Healthcare delivery needs to learn to operate on ALS time. The problem applies to research studies, too.
Recently there has been a buzz about a study in Italy where some PALS appeared to have plateaued some symptoms in a trial of lithium, a readily available, serious prescription product approved for some other indications. The study was small, but researchers are paying attention to it. They are are expressing good scientific scepticism. Consensus is that more studies are needed, not only to see if the results can be duplicated, but also to monitor the significant side effects of lithium.
More studies... those don't happen overnight. There are funding to gather and protocols to build and approvals to gather. Those things normally happen at the pace of healthy people whose lives were issued nice slow hourglasses.
While the research world crawls along, the fast-hourglass crowd can literally lose all their sand by waiting. They can also subject themselves to harm by trying a treatment that has not been fully tested. Many study the situation and roll the dice.
Some of the fast-hourglass crowd have taken matters into their own hands. http://alslithium.atspace.com/ They have a Google spreadsheet and are helping one another monitor their results on lithium.
ALScounts hopes and prays that they'll find success and no harm. ALScounts wishes that we had a good national registry so that data on PALS who had been using lithium for other medical conditions might be studied today. ALScounts hopes that some forward-thinking foundation or agency that understands ALS time will quickly get out a checkbook and help with the scientific gathering of more data on lithium and ALS. Quickly. The sands are slipping far too quickly for our PALS.
Friday, February 8, 2008 - Is Pulaski County, Indiana Harboring More Than Sandhill Cranes?
ALScounts stumbled across a blog yesterday where the blogger mentioned Grandma Martha's ALS and how it seems like there are a lot of people in Pulaski County, Indiana afflicted with ALS.
"Even as I write this, it's hard to believe that it's been over two months since Martha died. You know, before she got sick, I knew virtually nothing about Amyotrophic Lateral Sclerosis. I did not know anyone who had the disease. The only thing I knew about it was that it was more commonly known as Lou Gehrig's disease, and it was ultimately fatal. Now, we've lost Martha, we have heard of five or six other people in Pulaski county with ALS, and I know of another man who was just diagnosed with the disease yesterday, also in Pulaski county. That's a little bizarre. It certainly makes you think it might have some environmental influences or causes. Anyway, not to put a macabre spin on this little posting, but it popped into my head, and since I'm doing the typing, it made it to the Internet for perpituity."
Pulaski County is about midway between Chicago and Indianapolis. The old railroad tracks run through its small towns and it's highly agricultural.
Roughly 14,000 people live in the county. That's only about .0000467 of the U.S. population of around 300,000,000. If we suppose that the 30,000 Americans with ALS premise is correct, Pulaski County's share of PALS is only 1.4 at any moment in time. If there are 3 PALS in Pulaski County right now, that is over double what one might expect. If there are 6 PALS in Pulaski County right now, that seems astronomical.
Of course, if we had a good registry of patients, the numbers could be verified and our health officials could stay on top of any real or perceived clusters. In the meantime The McKay Chronicles did us all a favor by capturing an observation on the internet.
When ALScounts looked up the industrial profile of Pulaski County, the ultimate irony showed up... The Braun Corporation .
Tuesday, February 5, 2008 - What Color Is ALS?
ALScounts salutes Laura Bush and the cause for women's heart health awareness. The red dress campaign is brilliant and now in February women and healthcare professionals have constant red reminders of the importance of understanding women's heart health.
Our senses are also filled with reminders of breast cancer awareness when we see pink. The Race for the Cure has done a wonderful job of raising our awareness and understanding of breast cancer and when we see people dressed in pink on race day, we know that they have a connection to a very important cause.
What color is ALS? We've not done a very good job of branding ALS with a sensation like color. Part of the problem is that PALS die so quickly. Part of the problem is that PALS can't wear just anything. Their togs often involve Velcro closures and fabrics that don't come in just any attractive color.
Yet another part of the problem is that the Joe and Jane Public don't perceive ALS as something that could strike them or their family at any time. But ALS could strike any family at any time. Until we figure out the cause, we're all at risk. We need to make a connection to the senses that will help the public remember Lou Gehrig's Disease. Perhaps on World ALS Day we should all raise awareness with the ripping sounds of Velcro.
Sunday, February 3, 2008 - Ours Is A Country That Recognizes A Problem And Solves It... Usually.
ALScounts enjoys the Sunday paper. This morning on the sports page there was an article on the 10th anniversary of the first-down line on televised football games. Eleven years ago games weren't nearly as enjoyable to watch when the camera angles could fool the viewer about where that receiver needed to be for the first down. Some clever engineering has made the first-down line one of the great inventions for football fans.
On the business page, there was an article on Starbuck's decision to discontinue breakfast sandwiches. They're profitable and not a big problem today, but as part of Starbuck's focus on their roots in their long-term business plan, the sandwiches must go. They analyzed the markets and anticipated a problem and are taking action to fix the direction of the ship.
You can enjoy watching the football game today and you can get a cup of coffee on virtually every street corner, but we're still waiting for that American ingenuity to fix the ALS problem. Perhaps we have not done enough to make people recognize that we have a problem that can really spoil a football game or a cup of coffee for a person with the disease.
Thursday, January 31, 2008 - There's More To The New Yorker Than Great Cartoons
There's a great article this week on drug research, too.
The New Yorker January 28, 2008 Medical Dispatch " Buying a Cure - What business know-how can do for disease" Jerome Groopman Article
It's a long article but very, very pertinent to the inefficiencies that many of us sense with ALS research. Just as ALScounts was getting ready to campaign for this approach to ALS research, the author delivered the clinker of a message for a clinker of a disease. --
"With its focus on deadlines and drug development, Giustis approach is best suited to a disease such as myeloma, whose basic biology is at least partly understood. (For maladies that are still largely mysterious to doctors, such as A.L.S.also known as Lou Gehrigs diseasea more creative, open-ended research model may be needed.)"
ALS was called out as having a special problem. Since there is no known cause (or even a good understanding), the search for the cure can't be put into a such an efficient, businesslike model. Compounds are thrown at ALS and we see if something works. Until we gather the information that will enable the understanding of the disease and possible causes, people with ALS seem to be cursed with what one might call the creative, open-ended Keystone Kops model for research rather than the Giusti model. Some investment in collecting the dots so that mysterious ALS can be understood would actually pay off in more efficient drug research for the disease. An ALS Registry isn't exactly a barrel of pork!
Friday, January 25, 2008 - Are You Sick And Tithered of ALS?
ALScounts just saw a silly internet survey on how people will spend the proposed tax rebates intended to fix our economy.
Regardless of your thoughts on whether they'll fix our economy, maybe they can help fix ALS.
Let's just arbitrarily start with the last eleven years...
Very conservatively, perhaps 5500 American PALS have died each year for a total of 60,500 PALS.
Suppose each of those PALS left behind four taxpaying loved ones, friends, or co-workers.
60,500 * 4 = 242,000 people who should care... let's estimate at 250,000 since I'm pretty sure some had a lot more than 4 loved ones and friends and we could always dig back more than 11 years.
Suppose each of these people gets an average check of $400 and we asked each to give just 10% of that to the cause.
250,000 * $40 = $10 million dollars.
Enough to start a registry?
A few people making a small commitment might make a huge difference. Maybe we can find an unintended good consequence of these rebate checks and solve a problem that we've not been able to solve directly with legislative help. Anybody want to ask Senator Coburn if he'll commit 10 percent from his check?
Wednesday, January 23, 2008 - What If Seurat Had Said, "Dots Enough Of The Dots?"
What if Georges Seurat had stopped with his painting of dots at the upper right? Please click on it and take a look. What's to the right of that mountain? Is there a steep valley? Is there a meadow with flowers? Is there a French vineyard? Is there water? Is there a river gorge? Are there people? Are there cows and a barn? Is the sun out? Is the sky threatening? The possibilities seem endless.
If Georges had stopped with the dots, we would never have seen the whole picture and that his mountain of dots on the left was next to the sea.
So why would it be a good thing to have stopped gathering more dots to connect for our veterans?
Tuesday, January 22, 2008 - This One Got Under The Radar!
Around six or seven years ago there were reports of studies that found higher incidences of ALS among some military veterans of the first Gulf war. More recent studies have shown higher incidences of ALS among all veterans of United States military service.
In 2003 our government did something very positive. They established a VA ALS Registry to gather some dots about the veterans who were diagnosed with ALS. Every veteran diagnosed with ALS was encouraged to have his or her data captured and retained so that the correlation could be figured out.
The VA Registry is considered among advocates to be one of the bright spots in the fight to gather some dots about ALS.
Guess what? ALScounts heard yesterday that the VA was no longer accepting new patients in their ALS registry. ALScounts thought surely that would be another false internet rumor that should be reported to Snopes. Unfortunately it's true. Following is from an an inquiry ALScounts made this morning of ALS@med.va.gov :
We are no longer enrolling new veterans, we stopped enrollment on 9/30/2008 when our funding ran out. We are continuing to follow all enrolled veterans every 6 months. The National Registry of Veterans with ALS was never intended to go on indefinitely.
Barbara Norman Project Coordinator National Registry of Veterans with ALS Durham VAMC Durham, NC
So we've stopped gathering the dots for newly diagnosed veterans. With all of the billions and billions of dollars we spend on "projects" that we expect veterans to do, it would have been nice if they had saved a few bucks to continue to gather some clues about a rather rotten side-effect of military service. Some of the casualties of brave service men and women happen long after their discharge dates.
Sunday, January 20, 2008 - Time Flies While We're Losing Lives
Take a look at the picture of the dude on the left. That's a really old picture. I'll bet he had to sit perfectly still while the photographer used all kinds of incendiary devices to get the lighting for the portrait just right. That's the way they took pictures back then.
That's Dr. Jean Martin Charcot. In 1874 he first identified the creeping palsy neurological phenomenon that we call ALS. It's actually called Maladie de Charcot in his native France. 1874 was just a few years after the American Civil War. There were no automobiles. There were no airplanes. There was no penicillin. There was no insulin therapy for diabetics. There were no treatments for cancer.
We have an interesting symmetry of numbers this year. Lou Gehrig died 67 years after Charcot had identified ALS. This year it has been 67 years since Lou gave it a name that Americans could finally remember. One would think that in 134 years that someone would have picked up Charcot's clues and figured this killer disease out!
We can't afford to let another 67 years slip away while we needlessly lose precious lives to a disease that remains a mystery. Finally we need to dedicate the resources and information and time and talent to make as much progress with ALS as we have with photography.
Thursday, January 17, 2008 - Perhaps We Could Criminalize ALS?
ALScounts lives in a state whose government has never been confused with a well-oiled machine. Yesterday we heard about the state of our judiciary, and there was actually some good news. Information and readily available technology are being used for citizen orientation, for making protective orders available to courts and law enforcement, and to provide consistent and efficient court records to assist the quick and fair administration of cases. Wow. The investment in information not only pays off for those dealing with cases in the system, but it also protects all citizens. Information is available for professionals to help prevent domestic violence. Information is available to come up with solutions to jail overcrowding.
Our courts have seen the light that information can help them solve problems whose solutions were previously buried in file cabinets somewhere. Maybe we can get physicians' dander up that attorneys are having better information to solve problems than they are. If ALS were a criminal offense, there's a good chance that PALS' medical histories could live on in an accessible form so that somebody could solve the problem.
Sunday, January 6, 2008 - ALS Is A Snarge Of A Disease
Our Air Force has an interesting system to help our fighter pilots in Afghanistan avoid potentially deadly collisions with birds.
Whenever a bird has been hit by a plane, the residue is scraped off and sent to the Smithsonian for analysis. The residue is called "snarge" ( ALScounts leaves it to you to Google the derivation of that term).
The Smithsonian identifies the bird (sometimes by feathers, sometimes by dna) and enters data into a bird collision avoidance database which calculates the odds of a plane hitting a specific species at a specific time. The Air Force in Afghanistan is able to adjust takeoff and landing schedules to avoid bird collisions. This approach of using information to enable avoidance has been much more effective than the traditional techniques of trying to get the birds to move elsewhere.
Nobody has an ALS avoidance database for our pilots. If the CDC isn't able to handle the task, perhaps the Smithsonian can help?
.................................................................................. How can we connect the dots if we're not even collecting the dots? ..................................................................................