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, October 18, 2013

Paging Dr. Google, Paging Dr. Google

If you are new to ALS and searching for a treatment or a cure or simply hope, here's a tip.

When using Google, be sure to try

  • Search Tools
  • Any Time
  • And change the time frame to some years in the 1980s or 1990s or 2000s.
That won't be a pleasant experience, but it will help you sort out what's new versus what has been around and tried for decades.  It will help you sort out the revisionist history that you may hear from people or organizations.

We all wish you well in your search.  There are certainly things worth trying, but please go in with eyes wide open that some concepts have been around since Lou and Eleanor and that some so-called experts have been tossing those "exciting" and "promising" and "breakthrough" words out for decades.

And if you try something, even something simple, be sure to leave a trail of your experiment at a public place like www.patientslikeme.com so that others may benefit.  Let the data speak.  As you have probably found by now, people with ALS hear far too many anecdotal reports and not enough data.

Prayers for all fighting this beast.  


Tuesday, October 15, 2013

Travel Teaches Lessons That Last A Lifetime

The year: 1989
The place:  Moscow, in the olde U.S.S.R.

Every time our government-guide/chaperone pointed out something of interest on our left, we soon learned that there was something on our right that she didn't want us to notice.

Who knew that this lesson would come in so handy in life?

Saturday, October 12, 2013

Thank Heavens These People Didn't Design Our Interstate Highway System

Imagine a highway system where the people who wanted a highway from New York to Chicago built one.  And the people who wanted a highway from Cleveland to Saint Louis built themselves a road.   And the people who wanted a highway from Kansas City to Denver poured their own pavement.  And the people who needed to get from Dallas to Los Angeles constructed their own road.  And the people in Seattle who wanted to get to Miami blazed a long and impressive trail.

A mess?  Indeed.
An expensive mess?  Yep.
An unbelievable premise?  Sure.

Today we have a very expensive ALS "Registry" project that was implemented by the CDC.  We know little of its status because of the cone of silence that has enveloped those who are invited to participate in its annual meetings.  We know that it has passive surveillance of government records of ALS cases at its backbone, and we know that there is some self-enrollment that complements the mined data.

We also have a PRO-ACT database provided by NEALS that houses clinical trial data on many of the same people who are in the CDC's registry.

And the MDA has recently announced the launch of its own patient "registry" that will capture data related to patient care and natural histories.  We assume that this will house information on some people with ALS who have fragments of information in the CDC's "Registry" and the PRO-Act database, too.

And at the recent Team Gleason Summit, leading ALS researchers spoke of the need for some "big data" concepts of holistic views of patients so that every patient can be a research patient.  Oh, and nobody present involved with the CDC project or the MDA project mentioned those within earshot of the webcast.

A mess?  Indeed.
An expensive mess?  Yep.
An unbelievable premise?  We're living it.  Oh, and we're paying for it.

Friday, October 11, 2013

Lou Knows



Ability is what you're capable of doing

Motivation determines what you do 

Attitude determines how well you do it 



The fight against ALS has failed to deliver a treatment. We must face that we collectively and individually have failed. Feel-good pats on the back for effort don't save lives. We have not won the fight.

Is it our ability?
Is it our motivation?
Is it our attitude?

We must fix all three.  Lou knows.

Wednesday, October 9, 2013

This Is Putting Heads Together?

  1. A few weeks ago Team Gleason assembled an unprecedented group of scientists, clinicians, and organizations (at Team Gleason expense) to put their heads together and fix the fight against ALS.  The MDA was among the organizations represented.
  2. Throughout the Team Gleason Summit, conversations touched on information needs and the data concepts that would be central to speeding the development of therapies.  It was a persistent thread.  
  3. As I listened on the webcast, I didn't hear a peep from the MDA about information or data.  Not a word.  Nothing.
  4. Today we see this big announcement from the MDA --  http://mda.org/media/press-releases/quintiles-selected-muscular-dystrophy-association-develop-us-disease-registry


So much for putting heads together.  I'm not sure that Team Gleason got its money's worth.

Thursday, October 3, 2013

The Difference Between Hope and Hype Is A Single Letter

We learned a lot from the discussions at ALSTDI's conference today.

One of the afternoon panelists made the statement that stuck with many of us -- The difference between hope and hype is just one letter.

I've longed for some kind of Pinocchio-meter for all of the "promise" touted in the fight against ALS.  Perhaps we can use a Hope-Hype image that fades to the correct vowel when time reveals the truth.

Please tame the hype.