ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Friday, June 29, 2012

We All Know Poor Signage When We See It

And when the signs aren't clear, do we pay attention to any of them?

Please take a moment to read this report which was presented by a gentleman with ALS to some of the leaders of the U.S. National ALS Registry this week.  It contains important data and perspectives related to the awareness of the ALS Registry.

Every person with ALS needs to know the "what, when, why" of the National ALS Registry.  There are three important action items for each person diagnosed with ALS --
  1. Self-enroll at http://www.cdc.gov/als
  2. Complete the six additional Risk-factor Surveys
  3. Complete the Ouality of Life updates at regular intervals
That's it. 1,2,3.  Repeat 2,3 as needed.

The message has been lost in the muddle of stuff that families hear in the first weeks after diagnosis.  Or has the message been delivered at all?

Taxpayers have spent millions and millions and millions of dollars on this project.  It's an important improvement over the decades when clues from people with ALS were buried with them.  The least we can do is get the message to people diagnosed with ALS clearly so that their data will be retained.

It's a matter of getting the right message to the right people at the right time.

And you don't fix poor signage by buying more signs to add to the message clutter.

Wednesday, June 27, 2012

What Comes To Mind When You Hear "Duke Blue Devils?"

Coach K?
Nah. As great as Coack K is, the definitive response is Dr. B.



This is well worth sitting back and listening for a few minutes.

Wednesday, June 20, 2012

Thank You, American Academy of Neurology

It was a wonderful surprise to see a tweet come through from @AANmember to urge neurologists to encourage their patients with ALS to self-enroll in the National ALS Registry.  Here's a new article on the AAN website --
http://www.aan.com/news/?event=read&article_id=10607

Immediately after diagnosis, the neurologist has a big impact on the actions that a person with ALS and the family take (or don't take).  Many patients have reported not hearing anything about the National ALS Registry from their physicians, therefore, they had been hesitant to self-enroll.  As of today, we see that changing.

Thank you, AAN!

Thursday, June 14, 2012

July 4 Needs To Be Special At Every Baseball Game!

On July 4, how about having every baseball game remember Lou Gehrig's farewell?  Major League Baseball all the way to backyard Whiffle Ball games played while waiting for the burgers on the grill... just take a moment to remember an historic day in baseball.

This isn't complicated.  It's not a fundraiser.  It need not disrupt the fireworks and parties.  It's a very simple and fitting way to remember a great sportsman, a great sport, and a disease.  It would teach children who Lou Gehrig was.  It would remind us all of what is important in life.

Let's add this tradition to a sport that is rich with traditions.  Those who control the displays at professional ballparks, please simply play the speech.  Those who are playing on a sandlot or backyard, please take a moment to talk about what Lou had to say.

Wednesday, June 13, 2012

Some Of Us Need To Put More Fight In The Fight Against ALS

Chapter I


Doctor's Message - Day of Diagnosis

Doctor, you would be amazed at how much your patients and caregivers hear and retain that day.  You set the stage for a complicated trip that they face.  They have some fight in them.  Do you realize that when you tell them about an opponent that they can't beat?

Do you consider the importance of giving them some constructive action items?  They are important. They need to be clear.

Here are two that come to mind --

1. The patient should self-enroll in the National ALS Registry and continue to participate in the risk-factor surveys at www.cdc.gov/als . The patient and family need to know that you doctors do not report ALS cases to any health agencies.  The only way to guarantee patients' data and life factors will be retained is for the patient to take action to self-enroll 
2. The patient should become familiar with clinical trial opportunities immediately.  The window to qualify for a clinical trial is short, and patients need to be informed about the options.  Doctor, if you can't cure the patient, then please give the patient some ways to contribute so that the next person may not face the same unfair fight.
Those are two constructive action items that let the patient fight back a little.  They are important.  If patients and caregivers only get messages and materials that involve acceptance of the ALS beast, then we healthies have taken some of the fight out of the fight.  The action message needs to come from the neurologist. It needs to be clear.  It then needs to be reinforced.

We need to put more fight in the fight.



Monday, June 11, 2012

How About Some ALS Awareness On Flag Day?

There are around 6000 annual deaths from ALS in the United States every year. Approximately 12.1 percent of U.S. citizens are veterans. If veterans experienced ALS at the same rate as the general population, there would therefore be around 726 U.S. military veterans' deaths per year from ALS; however we know that the military experience ALS at twice the "normal" rate. So we're looking at around 1452 U.S. veterans dying from ALS every year. Please check my arithmetic because that seems so very high. Perhaps we should have 1462 American flags displayed in every metropolitan area on Flag Day. That would start some conversations.

Thursday, June 7, 2012

Sic Transit

Curing ALS Is Difficult. This Would Not Be Difficult.

This morning my Google news alert popped up with an ALS obit (which it does often). The name was unusual and the same name as a minister in my city who died from ALS around 10 years ago.


"Familial?" certainly popped into my mind. Or maybe simply coincidence.

For many years I've thought that it would be a valuable project for an ALS organization to archive ALS obits and establish a very simple online database of last names and dates of death. It surely wouldn't be difficult to capture the public information online. It seems like a simple project for an intern or a dedicated volunteer.
It could be useful not only for identifying possible family ties but also to retain more about the remarkable people who are stolen by this stinking disease.  The endless stream of obituaries supplies us with information that is well worth keeping for many reasons.
 

Wednesday, June 6, 2012

The Point Can Be Boiled Down To 140 Characters

As many ppl get ALS as MS. Wow. Not as many ppl w ALS in our midst, tho. So what happens to all the people w ALS? Clue: They don't get well.

Monday, June 4, 2012

Tonight Canada Is Shedding Light On ALS

Tonight the CN Tower will feature purple lights in honor of ALS MND Awareness.

http://www.prlog.org/11889867-commemorative-lighting-of-cn-tower-candle-lightings-on-parliament-hill-halifax-waterfront-in-june.html

http://www.cntower.ca/en-CA/Plan-Your-Visit/Attractions/Night-Lighting.html

And there is a  moving event on facebook where people are joining by lighting candles tonight to remember those fighting ALS and those loved ones whose lives have been taken.

https://www.facebook.com/#!/events/329018427174261/331159963626774/?notif_t=plan_mall_activity

Today is a day we can be thankful for the power of the internet to spread an idea. Please spread the word and make tonight's a global observance.