Four Years Ago Who Would Have Known?

During the London 2012 Olympics around 340 people will die daily from ALS.  That's well over 5,000 funerals during the 16 days while we watch Bob Costas tell us of athletes who achieve greatness and others who must look ahead to Rio.

Most of those 5,000 were feeling just fine watching the Beijing games just four years ago.

Wham.  ALS changes everything and it hits quickly.

Looking forward to Rio?

Wouldn't This Be Interesting?

Would clinical trial design be different if a few people with ALS were at the table when the exclusion criteria were written?

Certainly nobody wants to compromise good science, but are today's trial designs stuck in a rut from the past?

They Did It

Yesterday I think we witnessed the most impressive thing ever done to raise funds for ALS research.  

It was a record in many ways.  It was exciting and fun to follow. It was inspiring.

Thank you, www.channelforALS.org .

Go, Go, Go!

The Channel for ALS team is on the home stretch back to the white cliffs of Dover.  Tweets indicate that they are on a world record pace.  This is the most exciting ALS event ever!

http://www.channelforals.org/

You can watch their twitter stream there and get a link to track their escort boat live, or you can get updates and pictures on facebook.

These are amazing women doing a remarkable feat for ALS research.

If you've not done so already, please consider tossing in a few dollars for the cause at http://www.channelforals.org/ . Be a part of something special. I was impressed that they even made a note that none of the donations will go to their travel expenses.  It's for ALS research.  Class.

Let The Data Speak

Let the patients speak.  Better yet, encourage the patients to speak.

Yesterday we heard of a "promising" new treatment that is being tested in a clinical trial for safety on 12 patients.  We heard words like "exciting" and "compelling," but we didn't get any specifics.  It will be years (if ever) before we see the efficacy data to support those words of promise.  The words were music to the ears of those of us who are not scientists, but how much more meaningful would they have been if we could have seen some data voluntarily supplied by people in the trial.

Whether people with ALS are in a formal clinical trial or in a do-it-yourself trial, why not encourage them all to share their data in public place where others can benefit from insights into the data?  I know, it's just not done that way.

Why not?

• In a double-blind, placebo-controlled trial, it's really a purer environment if the patients are clueless.  I get that. But this is ALS, a disease like no other.  Do both the patients in the trial and those on the sidelines not have an ethical right to know more?

• If a couple of patients start to feel better, that could cause a placebo effect of lots of patients feeling better.  I get that, but this is ALS, a disease like no other.  If placebo can save these folks' lives, then we'll be quite happy.

• If a couple of patients get a rash, that could cause everybody to start itching.  I get that, but this is ALS, a disease like no other.  People who put up with the things that ALS throws at them aren't likely to be deterred by side effects if the end goal of life is being met.

• If the trial data aren't living up to the promise, it could scare people (including investors) away.  I get that, but this is ALS, a disease like no other.  It's the ultimate in knowing when to hold 'em and knowing when to fold 'em... in many ways.  

• Lay people don't know how to interpret the data. I get that, but this is ALS, a disease like no other.  There are some very smart people who get ALS. 

• There are all kinds of privacy concerns. I get that, but this is ALS, a disease like no other.  Data can be shared online ( http://www.patientslikeme.com/ comes to mind) under a creative screen name.  Encourage each person with ALS to share data and let each decide whether there are personal privacy concerns.

We struggle with regulatory systems that are slow and very protective.  Perhaps one of the keys to helping people with ALS is already in the hands of the people.  Perhaps all stakeholders should encourage the data to speak by encouraging the patients to share data.

Please let the conversation begin.

Be Sure To Follow @ChannelForALS on Twitter

Watching their tweets is the next best thing to swimming the English Channel with them.  Go for the record, ladies, and thank you!

This Can't Be Rocket Science

Google can alert me when almost anything that interests me happens. Ebay can alert me instantly when somebody bids. Amazon can alert me when a new book is available. Airlines can alert me when it's time to check in. Any Walk to Defeat ALS can alert me the second anybody donates to my team.

Why in the world can't clinicaltrials.gov alert me the moment an ALS clinical trial opens for enrollment? 

Clinicians' and Patients' Perceptions Differ In So Many Ways

Here is a very interesting article on the perception gap related to ALS treatments.

The article cites patients' perceptions and included data shared by patients at www.patientslikeme.com.

Conclusions were that both perspectives need to be taken into consideration.  For this we needed a study?

It shouldn't be a news flash that there are many perception differences between patients and physicians; however, we seldom talk about them frankly.

Decades ago in the pre-mall age when I was in junior high, my best friend and I would take the bus downtown for shopping or lunch or a movie or to buy records (remember those?).  She was the daughter of a prominent surgeon.  She was also diabetic and had to have regular blood tests.  On one of our shopping jaunts, she had to stop at the big medical building downtown where most of the docs in our city had offices.

I had spent so many hours in that building's waiting rooms as a child that I can still remember its smell and terrazzo floors.  The eye doctor always had Readers Digests that fell apart from wear or  Highlights that had been spoiled with someone else's crayons.  The orthopedic surgeon had the constant sound-effects of typewriters.  One typist would click-clack so fast, only to have long pauses for the eraser. That would make some of the waiting patients smile.  The internist had little to read but that wasn't an omen of quick service. He managed to have a ritual waiting period even if you were the first patient in the morning.  Time went quickly because there was often a booster shot waiting.

Shortly before lunch time that day, I followed my friend into the endocrinologist's office where she was to get her blood test.  There were people in the chairs in the wood-paneled waiting room.  Ugh. I had visions of a terribly late lunch.  She checked in and was welcomed like a long-lost friend.  She went straight through the magic door that requires the dreaded waiting-room initiation for mere mortals.  She was out in five minutes and there wasn't that added step where you had to hand a check to the bookkeeper.  It was a very pleasant and efficient experience.

That was my first clue that physicians and their families do not experience the same healthcare delivery system that the rest of us do.  They have access.  They receive professional courtesies.  They certainly have earned those things.  In any profession, there is a peer respect that oils some wheels.

Do our physicians admit that they've not really experienced the healthcare delivery that their patients have?  Do they try to understand the differences?

Fortunately with the perception gaps related to treatments described in the article, physicians and allied professionals have ways to look online and try to understand those gaps... but do they?

Walking a mile in the other person's shoes is always good.  Are any neurologists up for spending a day in the other person's wheelchair during a grueling morning at the ALS clinic?  Of if you want to stick with walking in another's shoes, the caregiver gig at the doctor's office isn't a walk in the park.

How Far Would You Go?

These women are amazing.

http://vimeo.com/palindromevideo/life-cycles

Dear Seth MacFarlane, You Give Us Way Too Much Credit

ABCnews.com carries a response from Seth MacFarlane over the brouhaha around his movie Ted and ALS --

"I lost my mother to cancer, yet there is a joke in the film which contains the word cancer," he said. "I urge analysis of context, lest the 'outrage industry' get the better of us."

You give us too much credit when you suggest that we're part of some kind of "outrage industry."  The fight against ALS has not exactly been a well-oiled machine.  It has been fragmented for many years with numerous organizations following good intentions rather than common goals.  There has never been one voice.  It would make a poster-study in having none of the earmarks of an industry.

You did give us some industrial-strength glue last weekend when your fictional John uttered the words, "From one man to another, I hope you get Lou Gehrig's Disease," to your fictional villain Rex.  Perhaps you should have picked a fictional disease for your fictional pox.

You see, we are simply angry and frustrated with you.  That is our common voice.  That is our glue. The social media that make movie lines legendary also make it possible for a grass-roots bunch of people affected by ALS to speak out.

We have lived through a week when your movie line has become a tagline for your fans on twitter.  I suspect that few of them know who Lou Gehrig was, let alone what is implied when his disease is wished on someone.  Thousands of times the line has been robotically and mindlessly repeated on twitter.  That is troubling.

I have a feeling that you didn't write what you know when you crafted that line.  If you had ever met anyone with ALS, I am certain that you would never have written it.

And your response reinforces the fact that you don't understand ALS or the people who are dying from it or the people who are left behind.  Please stop arguing like an NBA player who never committed a foul.  Please talk to some people with ALS and try to understand what's different about these people.  You will be a better writer for it.

As a writer, you choose words carefully.  Why did you choose "Lou Gehrig's Disease?"  There must have been a reason.

Wahlberg Says, "Take It Up With Seth."

http://947freshfm.cbslocal.com/2012/07/05/podcast-mark-wahlberg-on-als-take-it-up-with-seth/

Dude?

And Herein Lies The Problem, Seth MacFarlane and Mark Wahlberg

A tweet just came through from some folks at USA Today @kimpainter @lifelinelive that points out the reason why ALS advocates are outraged with your ALS reference in the new movie Ted .

Here is the problem --
https://twitter.com/#!/search/realtime/From%20one%20man%20to%20another,%20I%20hope%20you%20get%20Lou%20Gehrig's%20disease

Go ahead and click on that link.  Sure looks like a line from the movie caught on.

Perhaps it's time for you to meet some people with ALS so that you can understand why seeing a list of flippant tweets like that is so wrong.

Thanks For Your Leadership, ALS Therapy Alliance

For the last 48 hours there has been internet buzz regarding Seth MacFarlane's use of ALS as a point of attempted humor in his new movie, "Ted."

Finally an ALS organization has stepped up with a statement.

http://www.marketwatch.com/story/seth-macfarlanes-movie-ted-causes-punch-line-about-lou-gehrigs-disease-to-become-pop-culture-chatter-on-twitter-facebook-2012-07-03

Now if only a few others would show that they have the backs of those with ALS by speaking up in the media.

Organizational backlash works.  This is an especially important week for the world to understand that there is still no known cause, there is no cure, and ALS isn't a disease to joke around about.

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.

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.

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!

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.

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.

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.

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.
 

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.

It's Time We Addressed the "R" Word With Some Numbers

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.

Thanks, ESPN

Here's a nice piece to start the finale of ALS Awareness Month...

http://espn.go.com/college-sports/recruiting/football/story/_/id/7982519/kelly-hilinski-takes-nana-randolph-last-words-heart

We need more grit like his in the fight!