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.

We Hope They'll Show This During The Superbowl!

Drew Brees for Team Gleason from Team Gleason on Vimeo.

Thank you, Drew Brees!

Wish We Used Stats To Scare Up Support

In yesterday's Wall Street Journal, The Numbers Guy, Carl Bialik, has another interesting column. This time he writes of health not-for-profits who find ways to present scary statistics to state their cases for support.

Article (subscriber content)

Related Blog

Here is a comment posted below the article --

Unfortunately disease prevalence has traditionally been used to establish relative priorities for much research funding, and prevalence simply doesn't tell the story for some diseases. I've been involved in the fight against ALS (Lou Gehrig's Disease) for a number of years. It has a relatively low prevalence and a high incidence, and therein lies the problem. It's like a cruel game of musical chairs where we keep pouring people into the room and when the music stops, there are very few chairs. The only exit is a door labeled "death." Many of our ALS organizations are resigned to the fact that disease prevalence has been the gold standard for government and private research funding priorities. That attitude will never bring ALS the attention it needs to be handled as an urgent, fatal, and mysterious disease with a horrific throughput. I wish the ALS cause had some of those numbers people who can express the odds in a way that would make every healthy person squirm!

Here Are Some Realistic Goals

Occasionally ALSadvocacy is chided by some people who work for ALS organizations. Some ideas such as inter-organizational coordination, awareness programs with global punch, a case study of the cost of the disease, educational programs at many levels, normalized reporting on annual investments in research, or a new standard for measuring a disease's impact are perceived as not being realistic.

Perhaps we can agree on a few goals for 2012 that are completely "realistic" from any perspective. Here are two.

Insure that every newly diagnosed ALS patient in the United States

1. Is immediately advised of the importance of self-enrolling in the CDC's national ALS Registry.

2. Is immediately advised of all clinical trial options available.

Those are simple. They are deliverable. They are measurable. They are important. They are not happening today. If they're not "realistic" then perhaps our organizations should find an easier disease to fight.

Remember The Over 5,000 American Lives Lost to ALS in 2011

Thanks to ALSA Philadelphia Chapter for pointing this opportunity out to remember loved ones and to raise some huge ALS awareness in The New York Times --

http://submit.nytimes.com/lives-they-lived

Please spread the word to all who have lost loved ones to ALS in the last year. The holidays are rough, and this is a good way to remember and teach others about the toll that this beast of a disease takes.

Who Represents Patients In This Puzzle?

Here is an interesting perspective on clinical trials --

http://bioworld.blogs.bioworld.com/2011/12/13/it%E2%80%99s-about-the-patient/

ALS certainly poses a completely different set of challenges for the drug companies trying to move a therapy forward, yet the question about remembering the patient has a special sting with ALS.

Wow!