We Hope Someone Will Record The Keynote

Welcome to New Orleans and ALS, AAN.

http://www.nola.com/business/index.ssf/2012/04/american_academy_of_neurology.html

ALS -- A Disease Like No Other

Thank God.

One of the subjects of the recent national media coverage of patients making their own drug trials told me, "The FDA needs to reassess its policy with regards to ALS. It is a unique disease and requires unique FDA policies."

Are we designing and pursuing change that will make a difference for those with the disease like no other?

Good Morning, America and the World

ABC News has picked up the story...

http://abcnews.go.com/Health/Wellness/lou-gehrigs-disease-patients-research-hands/story?id=16150103#.T46mgdWiZki

This is definitely worth reading and then rereading. Eric Valor is a rock star and a wise young man.

Are There Two Doctors Jonathan Glass?

April 13, 2012
http://www.mddionline.com/article/tedmed-stem-cells

Glass had one clear message for the audience: “We must reconsider, we
must redefine, and we must recalculate what is acceptable risk. And that risk
must fit the emerging technologies and emerging therapies that hold the enormous
potential to transform the treatment of disease in the practice of
medicine.”

April, 16, 2012
http://professional.wsj.com/article/SB10001424052702304818404577345953943484054.html?mg=reno-secaucus-wsj

Jonathan D. Glass, professor of neurology and pathology at Emory
University School of Medicine and director of Emory ALS Center, is one of the
NP001 site investigators. He said he is concerned that "these people could hurt
themselves. Who knows what they are actually making in their
kitchen."

It just gets curiouser and curiouser.

The Governor And The General Are Now Aware

...and helping to pass the word forward...




Thank you, Governor Daniels and General Umbarger.

Sometimes You Take Matters Into Your Own Hands

There is an excellent article in this morning's Wall Street Journal -- "Frustrated ALS Patients Concoct Their Own Drug," by Amy Dockser Marcus.

These are not whack-job patients who are grasping at theories that make no sense. These are young, bright patients who have done their homework and have a disease with no effective treatment options. The only options that the medical establishment offers them involve a quick downhill slide to death. Who can blame them for daring an intelligent roll of the dice?

Shame on us who are healthy and have provided them with a medical establishment that has not delivered for them and that cannot deliver in a time-frame that will help them. Shame on us for painting them into a corner. Bravo to them for making the world pay attention as they try to buy some time. Ben Harris and Eric Valor are heroes.

WSJ

There's A Chance You Could Win

Is today the day you buy that lottery ticket because the jackpot is over $500 million?

What are the odds you'll win?

They say 1 in 175,000,000?

We all like to believe that we just might be that one winner. We all like to daydream about how we could handle all that cash.

Here's a little quiz for you to keep your mind off how you will spend all that money.

What are the odds that you'll get ALS in your lifetime?

1 in 100,000,000?
No, much better.

1 in 10,000,000?
No, much better.

1 in 1,000,000?
No, much better.

1 in 100,000?
No, much better.

1 in 10,000?
No, much better.

1 in 1,000?
Bingo.

So if you believe that your numbers might come up in a 1-in-175,000,000 chance to win a lottery, you should really be squirming the next time you choke on a drink or slur a word or muff a golf shot or trip while walking. Squirm.

Oh, and if you happen to win that Mega Millions lottery, please do something radical to change the course of the fight against ALS. You never know when that 1-in-1,000 ALS "jackpot" will be yours.

There Are Some Good People On This Earth

Sit Back, Relax, And Enjoy Your Flight

Every day over 350 people die from ALS globally. Every day. 7 x 52. Even on weekends. ALS takes no holidays.

If a full jumbo jet were to drop from the skies every day, we would find a way to stop the carnage.

Why do we let ALS persist? Why do we sit back, relax, and lead our lives, oblivious to the threat?

Think about that the next time you take your seat on a big plane.

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.

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).