To Get A Feel For ALS, Read This Page From The Bottom Up

Scroll down and read about all of the awareness that was generated just a few weeks ago thanks to Steve Gleason and Superbowl 46. Look at the pictures. Feel the energy.

Now read this.

https://twitter.com/#!/team_gleason/status/180831928663023616/photo/1

Welcome to ALS.

What Is A Microbrewery?

There was a Jeopardy! clue this week about an operation that produces fewer than 15,000 barrels of beer per year.

The correct response was, "What is a microbrewery?

Do we measure breweries by the number of barrels in inventory? Of course not. It's a matter of production.

A very significant and large-production brewery could have a relatively small warehouse. The warehouse alone doesn't define the impact. You need to understand input and output.

Think about the way we measure the relative impacts of diseases. It has always been the number of patients in our midst at any moment.

The ALS factory makes a similar number of new patients every year as the MS factory; however, the ALS warehouse isn't very big. We have very few patients in our midst at any moment in time. For every new patient, another patient dies to make room in that tiny "warehouse" for the newly diagnosed. The MS warehouse simply accommodates more people, and therefore we don't perceive it as "rare" as ALS.

The conventional definitions of disease impact (prevalence) look solely at the size of the warehouse. We need to look at the number of people trying to pour into a very small warehouse. The small size of the warehouse is exactly the problem that makes ALS a hugely significant disease.

We're stuck in a prevalence rut that only looks at the warehouse.

The disease with the tiny warehouse and the big production needs to make some noise. The micro warehouse doesn't mean that ALS is a small problem. It means that ALS is a huge problem relative to ALS production figures. ALS is a Budweiser disease trying to cram into a pole-barn warehouse.

The Message For Today Is...

If you have ALS or if you know anyone with ALS, please encourage him or her to self-enroll in the U.S. National ALS Registry at http://www.cdc.gov/als

It's important. This is a registry that is designed by epidemiologists. The message needs to get to every person with ALS in the United States.

Please help by passing this information along today. Thank you.

Welcome Race Fans

And if you're not a race fan, fast forward to 4:39 and enjoy...

Each Year's Picture Is Worth 6000 Lives

Every May at the big ALS Association Advocacy Conference in Washington, DC, there is a large candlelight vigil for those attending. Recently a relentless, healthy ALS advocate posted a picture of a past candlelight vigil on her facebook page with the comment, "Really missed our old gang here."

The faces change. Every year. Many people with ALS get only one chance to go to Washington to get a few things off their chests with their legislators. They die far too quickly. This year's picture won't have the same faces as last year's. Every year the patient faces change.

Every year the healthy who attend in support of those who can't be there miss their old gang. Every year I hate to ask about somebody who isn't there. Every year I meet people knowing that the odds are that I'll learn more about them in obituaries that I'll read far too soon.

That's the problem with ALS. You can take a picture every year and the public will have the impression that it's like a family photo album where the family grows older and the hair styles change in the 10 years of Kodak moments. That's not the case with ALS. You would be shocked if we marked all of the faces we have lost in past photos.

Perhaps we should have a special candle display for all of those who have held candles at past vigils who have since died. It would be a huge display. It would grow every year. The increasing blaze would tell the story better in future snapshots. The increasing blaze would remind us that we must put out this fire.

Have All The Years Of Messaging Hit The Target?

I would love to have a very simple pop quiz this morning for two groups.

1. For the Members of the United States Congress and Senate:
True or False: "ALS is a service-related disease?"

2. For the members of the American Academy of Neurology:
True or False: "You advise ALS patients to enroll in the national ALS Registry?"

Simple questions. Revealing answers.

Have all the years of messaging hit the targets?

There's a great old Gary Larson cartoon about what dogs hear. It's a good lesson in how we can blather on and on and miss our targets.

It's time to fix the messaging.

More From Peter King On The Steve Gleason Story

http://sportsillustrated.cnn.com/2012/writers/peter_king/03/05/offseason/index.html

Irony, thy name is...

It's Like The Four-Point Swing

We think about the real dollar costs of ALS.

There are the obvious things.

• The huge medical expenses (with which, thank heavens, Medicare helps)
• The quickly escalating needs for durable medical equipment
• Modifications for the home
• An accessible vehicle
• And on and on...

There are the less obvious expenses.

• Therapy for the whole family
• Gas expenses for the new gas guzzling van
• Increased food expenses since the caregiver has no time to cook
• Major health and dental expenses for the caregiver who had no time for preventive care
• Educational opportunities missed by children who want or need to stay near home to help
• Paying to have things done that were always diy before the ALS
• Clothing that functions with ALS
• And on and on...

There are hundreds of things on the expense side of the equation.

Remember when the basketball coach explained that when you give the ball up on a turnover, you not only lose the two points you were about to score, you also give the other team a chance at two points. Turnovers often result in four-point swings. You have to look at the impact on both ends of the court.

Perhaps with ALS it's time we looked at both sides of the equation. We know there are lots of expenses. We also give up a lot nationally on the income side of the equation.

If a young person has to stop working because of ALS at age 25, suddenly that person's contributions to FICA and Medicare and federal, state, and local income taxes stop. That person's contributions to the GNP stop. Add those up over the course of a normal career, and that's a lot of money.

If a worker in the prime of his or her career at age 40 has to stop working because of ALS, it's quite possible that ALS has stolen at least 25 years of large contributions to all of these programs that keep our social and national defense and other governmental programs running.

ALS is not only an expensive disease on the expense end of the court. It also steals significant productivity and contributions on the income end of the court.

It would be interesting to do the math of the value of the lost income and related taxes of every person diagnosed with ALS over a decade. I suspect that it would be a "wow" number. I suspect that it could make the case for increased national focus on figuring out ALS so that expenses are reduced and at the same time income and productivity are maintained.

Some People Are Simply WInners

This was posted by @trevor83 at www.trackforum.com --

In less than 11 hours we will surprise a member of the Indycar community's family with a surprise remodel of their house. Carey Hall, former Sarah Fisher Racing crew member, has ALS. We will remodel the master shower for better accessibility and install laminate flooring throughout the house. You can see some of the coverage Saturday morning on WTHR 13 Sunrise. First segment live interview with Sarah Fisher somewhere around 8:45-8:55am. Footage of reveal at 9:55am and full story on the 6pm news. I believe Fox59 will catch the reveal live which will happen close to 9am. Jake Query will be impersonating Ty Pennington for our Extreme Makeover INDYCAR Edition. Home Depot has been the MVP of this project, they did things on their own accord that we didn't even ask for, incredible! Many thanks also to The Tile Shop in Castleton, Brozinni (brozinni.net) in Indianapolis and Chris Lechner. We will post updates when possible thru the weekend. You can follow updates thru the weekend on Twitter @trevor8383 & @KelseyUSA.

There are some good people on this earth. Thank you trevor83, Sarah Fisher, Jake Query, and all. As @jakequery just tweeted, "@sarahfisher and @trevor8383 surprise#CaryHall with a home makeover. Now Let's cure #ALS! yfrog.com/hw1qjmsj ."

Let's Start Some Peyton Manning Buzz To Defeat ALS

Compliments of Team Gleason, this morning in New Orleans...

https://twitter.com/#!/team_gleason/status/170950782689087488/photo/1

Everything Is More Difficult With ALS...

...including clinical trials and bringing products through trials. This article is shining some much-needed light on ALS and the dilemma of a system that protects patients to death.

It's Amazing What You Can Learn When You Ask, "What Should I Ask?"

One of the first things that can benefit an ALS patient after diagnosis is searching for a clinical trial that may give a chance at a beneficial new treatment and will certainly give a feeling of purpose in the battle against a disease without a good treatment.

There is a website that gives patients a lot of excellent information in evaluating clinical trial choices -- www.alsconsortium.org . The website doesn't have a catchy URL and the organization that maintains it doesn't have a name that really matches the mission clearly, but it is the go-to place for ALS clinical trial information. There is a physician who is an ALS clinical trial expert who is available for telephone or email consultations at no charge to patients. If only the well-meaning relatives who search the internet for hope for their loved ones would find this site rather than the Chinese miracle cure sites!

There are clearly choices in clinical trials, and one might wonder what a neurologist or ALS researcher would choose personally if faced with ALS. Some trials are more "promising" than others and some drug candidates have been around the block before without a lot of success. How does a patient sift through the trials to find the best personal choice.

It would be really helpful of neurologists and ALS researchers would contribute to a list of things that they would ask before choosing a clinical trial. Surely there are things like whether one trial excludes you from others, whether there is a placebo group, whether there is financial assistance for travel, whether the drug candidate has been tried for ALS before, whether there are likely side effects, whether the trial can move forward quickly, etc.

Is there anyone in our ALS organizations who might interview some experts to assemble the really good questions that they would ask? We're talking about the insightful questions that they would ask if they or their loved ones were in the ALS dilemma. This list of questions would be a valuable resource for patients (and for well-meaning relatives).

This Is My Dream World And Welcome To It

There are dozens of ALS multidisciplinary clinics throughout the United States. Each is branded as ALSA or MDA depending on the organization that provides standards and significant subsidies in its operation.

In my dream world, there would be a consistent message given by the neurologist to every patient and family on the first clinic visit --

1. Go to www.cdc.gov/ALS and self-register in the ALS National Registry. That is the only way to insure that your case will be counted and that your clues will be retained for scientific research. We will help you.
2. Find a physician doing clinical trials and participate in a clinical trial. The only thing the least bit "promising" would be experimental. We will help you.

Then this should be discussed on the second visit and the third until the patient and family have made an informed decision on each of these critical actions.

Now Showing At A Sony Pictures Theater Near You

Reports are that this has been seen at the movies in the last week --

Watch The Most Important Eight Minutes From The Super Bowl Coverage

Indy And The World Welcome Team Gleason!

http://www.wdsu.com/r/30374359/detail.html

Be sure to watch the video.

Be sure to watch for Steve Gleason on the Super Bowl pregame on NBC.

Super Bowl week has been outstanding in Indianapolis for many reasons. This is the perfect venue for Steve Gleason and a huge blast of ALS awareness. The world will be watching.

There Will Be Some Super Awareness on Sunday

http://www.alsa.org/news/archive/super-bowl-pre-game-show.html

http://sportsillustrated.cnn.com/2012/writers/peter_king/01/30/superbowl/2.html

Thanks to Steve Gleason and Peter King and all who will focus the eyes of millions on ALS on Sunday afternoon.

ALS affects NFL players (below) and firefighters and homemakers and teachers and soldiers and coaches and nurses and everyone. We must do more to stop it!

NFL ALS Roll Call

Steve Gleason

Eric Scroggins
O.J. Brigance
Glenn Montgomery
Pete Duranko
Peter Demmerle
Steve Smith
Tony Proudfoot (CFL)
Bob Waters
Matt Hazeltine
Gary Lewis
Orlando Thomas
Wally Hilgenberg
Kevin Turner
Bob Hohn

This Disease Is Simply Cruel

Dr. Richard Olney is dead at age 64.

http://www.washingtonpost.com/local/obituaries/noted-researcher-who-dedicated-life-to-researching-lou-gehrigs-disease-succumbs-to-ailment/2012/01/30/gIQA6gFVdQ_story.html

As You Watch The State of the Union Speech Tonight

Watch for Senator Murkowski. She deserves some camera time since she is a leader in eliminating the childish partisan behavior at the speech. She's also a leader in the fight against ALS and is wearing her Sunflower pin that represents the fight.

In a city where every lapel has its pin, Senator Murkowski has chosen one that is important to every person involved in the battle against ALS, and we are grateful for her and the awareness she raises.

http://sunflowertodefeatals.info/Welcome.php

Do you have your pin?

This Is Closer To The President Than We've Ever Been On ALS Advocacy Day

Here's an opportunity to speak up... ALS research needs, ALS in military, FDA reforms, ALS stealing our best and brightest but not (yet) perceived as a cash cow for pharma investment, dysfunctional healthcare delivery, lack of national (including governmental) urgency as people continue to die, using the wrong metrics to measure the impact of a disease,... Please pass along to anyone who might be willing to give the President and others in the Executive Branch an enlightening, compelling earful. regarding any ALS issues. Thanks!

Your State of the Union Interview With President Obama

http://www.whitehouse.gov/blog/2012/01/23/your-state-union-interview-president-obama?utm_source=wh.gov&utm_medium=shorturl&utm_campaign=shorturl

Teach People About ALS And They Will Come To Your Walk

Nice job, ALSA Florida Chapter and Dunn&Co.

If You Want To Be A Celebrity Spokesperson, Get A Disease Other Than ALS

The news is buzzing this morning about Paula Deen, her unfortunate diagnosis of Type II Diabetes, and the opportunity she will seize to be a spokesperson for Novo Nordisk in their direct-to-consumer marketing efforts. Phil Mikelson, Sally Field, Blythe Danner, Bob Dole, and others have raised awareness of both conditions and drugs to treat their conditions (and have made more than a few bucks for their efforts).

ALS would have some great celebrity spokespeople -- Lou Gehrig, David Niven, Jacob Javits, Michael Zazlow, Chairman Mao (how interesting that would have been), a significant number of NFL stars, Catfish Hunter, Charles Mingus, Dennis Day, Lead Belly, George Yardley, Georgia Bird, and on and on...

Oh, the problem is that they have no drug to speak about. And they die.

KING 5 Rules!

Thanks to KING 5 and to all who raised Cain and finally got through to the bureaucrats! This is good for veterans with ALS and good for taxpayers.

http://www.king5.com/news/investigators/Help-coming-for-veterans-with-Lou-Gehrigs-disease--137264418.html

Who Cares?

There is an article in this morning's Wall Street Journal about the spike in heart attack incidence within days of the death of a loved one.

Subscriber link.

A study of 1,985 adult heart attack survivors finds that heart-attack risk rises to 21 times higher than normal within the very first day after a loved one has died.

That sharp increase in risk tapers off with each day, but is still almost six times higher than normal within the first week and stays somewhat elevated for at least a month.

ALS caregivers work through a cruel mix of physical exhaustion and a creeping grief of watching a loved one slip away. They don't have time to go to the dentist. They don't have time to get the blood pressure checked. They don't have time for the routine bloodwork that can give an early signal to something serious. They get all kinds of bad advice from well-meaning friends. A healthcare professional never screens them for depression. Forget the colonoscopy. They self-medicate for aches and pains and skip vaccinations because there just isn't the time to deal with their own health when their loved one with ALS is seriously ill. Healthcare delivery doesn't give them an express line to a physician when they call for advice or an appointment.

Our ALS organizations, ALSA and the MDA, tout their multidisciplinary clinics as the most efficient and effective way for people with ALS to receive healthcare. They spend hundreds of thousands of dollars to keep these clinics available to patients. The caregivers drive patients to clinic and park the car and help the patient navigate the clinic and to listen to the advice of the neurologist and the pulmonologist and the therapists. Would it be that difficult to have a little primary care (think Walgreen's primary care) resource for caregivers during those visits? Would it not be part of responsible and holistic healthcare to include the basic health needs of the caregiver during that one-stop shopping visit for dealing with ALS? Talk about a missed wellness opportunity!

Has anyone done a study on the health outcomes of ALS caregivers after the deaths of their ALS patients? I'll bet there is a spike in a lot of health problems. Could we not save some lives by paying attention to caregivers' health?

Here's One For Ethics 101

Students in ethics classes love to sift through complicated scenarios that seldom are realistic. Medical ethics hypotheticals are among their favorites.

Try this one.

• 
  
  Patients have a quickly terminal disease.


• 
  
  They go from vibrant and healthy to unable to move or breathe in a matter of months.


• 
  
  Many sign up for clinical trials.


• 
  
  Nothing ever works. They struggle to figure out if they are getting worse less quickly after the experimental treatment than they were before. The bar for efficacy is low, and nothing ever clears that bar.


• 
  
  One clinical trial drug has resulted in some amazing, clear, anecdotal reports of improvements. This is huge. This is a surprise. This is different. This must be a clue.


• 
  
  The small clinical trial requires that after the patients' courses of treatment that they stay off the experimental drug for weeks.


• 
  
  During the weeks of no drug, the anecdotal reports show patients plummeting back to where they were before the trial started. The downhill slide continues with its former vengeance.

Are there not some ethical issues that need to be addressed here?

Are we not clever enough human beings to design trials where the data will speak and still allow the trial subjects a chance at life? Were we unprepared for a trial that would ever really do something for people with ALS? Are we right to simply watch and record data while patients fall like rocks?

This isn't a hypothetical scenario in some dream world. This is real. This is an ethical problem. This needs to be addressed.