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, August 30, 2013

Pick Your Bus

Here are the ground rules.

  • There is one empty seat on each bus.  Take your pick.
  • Each bus will pick up five people today.  Five riders will have to give up their seats to make room for the new riders and will be taken off the bus by the Grim Reaper.


One bus has 15 seats.

The other bus has 65 seats.

Which bus would you pick?

The smaller bus is a much bigger threat, eh?  Who would ever pick it unless you were anxious to get kicked off to meet the Grim Reaper?

This demonstrates the myth that smaller disease prevalence (the size of the bus) means smaller disease impact.

ALS is the Grim Reaper Express Microbus.  It's a lot worse than a big bus.

Tuesday, August 27, 2013

I Was Hungry...


They say that the bitterest words at final judgment will be, "I was hungry, and you formed a committee."

Perhaps a fitting corollary to that will be, "I was dying, and you had a meeting."

Food for thought in this, a big year for big ALS meetings.

Saturday, August 24, 2013

What Are The Barriers?

A few months ago I was discussing ALS with some people far smarter than I.  A gentleman asked me a thoughtful question -- "What are the barriers between you and a treatment for ALS?"

Wow.  I had to think about that.  I had a diverse list of answers.

What if various stakeholders in the fight against ALS put heads together and were candid with each other about the barriers they perceive?

We all might learn a few things.  We all might be able to move a few of those heavy sandbags.

Friday, August 16, 2013

Happy Physicist Taught Us All A Few Things

A gentleman with ALS who went by the online name "Happy Physicist" died yesterday. 

HP taught us all much. 

He was a scientist and is best known for his constant study and experimentation on himself to see if he could unlock a clue to treating ALS.  He understood science and he knew what ALS would do to his future if he sat back and watched.  And HP encouraged all people with ALS who tried things (and they all do) to share their data.  "If it is done in secret, then it is done in vain."

There is another mark that he left that some may not remember, so I take this sad day to remind us all.

HP studied available clinical trials and signed up for one he thought had promise -- Neuraltus NP001.  HP also knew that a day waiting to fill a clinical trial was as precious as a day waiting for the FDA or for scientists.  He took matters into his own hands to get that clinical trial filled quickly.   He used every social media device known to man to let people with ALS know about the trial.  He was a gazelle.

HP was from Bloomington, Indiana, and he traveled to Lexington, Kentucky, for his clinical trial infusions.  That was a long drive but worth it to HP. On one trip, HP got online and found the ALS Association Lexington support group meeting was happening while he was there.  He showed up at the support group meeting to try to recruit his peers to give the NP001 trial a whirl.  Here's the shocker -- they had no idea of this clinical trial opportunity in their own back yard.  Several signed up right away.

So the next time clinical trial sponsors or organizations or research scientists complain about patients not willing to enroll in clinical trials, look upward and remember HP, and tell them that perhaps someone should simply tell the patients about the trials.

Thank you, God, for HP.

Saturday, August 10, 2013

Prevalence Is A Red Herring

For years we have been told by our largest ALS organization that disease prevalence is the "gold standard" by which the public sector measures the relative impact of diseases.  That's just the way it is.

Questions from Congresspeople or Senators about constituents with ALS are typically answered with a logical guess based on a number that has been couched and hedged for years -- "As many as 30,000 Americans have the disease at any moment in time."  Carefully worded, eh?

Everybody knows somebodies who lost somebodies to ALS.  Oh, it's so easy to want that prevalence number to be higher so that ALS will rank higher on America's priority list.

That's a red herring -- a big stinky red herring.

We believe that as many people are diagnosed with ALS as MS every year.  That's incidence.  

The number of people living with ALS at any moment (prevalence) is a tiny fraction of those living with MS.  What happened to all the people who were diagnosed with ALS?  Hint:  It's not good.

Does smaller prevalence make ALS a smaller problem than MS?  Heavens, no!  It makes it a much deadlier problem.

High incidence and smaller prevalence form a toxic combination.  If you only look at prevalence, you are missing the boat.  Low prevalence does not make ALS a small problem. It makes ALS a huge problem.

So as the ALS Registry numbers unfold, we'll probably find in the data that there are far fewer than 30,000 people living with diagnosed ALS at any moment in the US.  Should we avoid that low-prevalence fact?  We need to stop leaning on a shaky prevalence guess that feels good for fundraising and speak to the data.  High incidence paired with even smaller prevalence mean that we have a large, urgent problem.

It takes a smart hound not to be thrown off by the scent of a stinky fish.  We need to be smart in the fight against ALS.  Leaning on an assumed "gold standard" with a shaky number isn't going to defeat ALS.

This troubling ramble that worships the red herring is from the report of the CDC's 2012 ALS Registry Annual Meeting at http://wwwn.cdc.gov/als/Download/2012%20ALS%20Annual%20Meeting%20Summary%20Report.pdf
While he did not want to hide information, it could possibly come out that there are not 30,000 people 
with ALS and that it is much lower.  There would be a lot of negative connotation about what this 
all means if there is a map with people in each state.  He could hear appropriators and 
Congressman saying, “You only have 2 people in the whole State of Texas who have this 
disease?”  He thought it was very important that consideration be given to everything in terms of 
research projects, because the intention was never to figure out the number of people who have 
the disease.  If incidence is higher in one state, that is important.  While they should not hide 
information, they should also not be distributing information that could be damaging to the 
research tool they wanted to create, particularly in a budget-conscious environment.  That could 
hurt the overall goal of finding a treatment and cure. 
[Hat tip to The ALS Battlefield for all his work.]

Friday, August 9, 2013

Let The Data Speak

What are the barriers between people with ALS and a treatment?

That's an important question.  There are some answers that may be surprising.

Organizational secrecy causes some big barriers, and it serves nobody well except organizations.

Think about it.

Let the data speak.

Thursday, August 1, 2013

Please Love Us (And Our Friends) For Our Minds, Too


Dear _____,

It's that Walk time of year.  As a participant in past Walks, we want you to be among the first to sign up and help us raise valuable dollars in this year's Walk.

Please sign in online and donate what dollars you can and tell your friends and ask them to donate as many dollars as they can.  Spread the word.  It makes a difference.  Your contributions advance the valuable work of our organization that is focused on beating ALS.

Thank you for your past contributions and we look forward to your help and the help of your friends and theirs and theirs as you all contribute valuable dollars to help in this Walk to fight ALS.

Sincerely,

________________

Ok, now simply substitute the word "ideas" for "dollars" and substitute "Advocacy Effort" for "Walk."

Get my drift?