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.

Thursday, July 28, 2016

It's A Gene

Google may have brought you here.  You may have been reading about an exciting or promising or breakthrough new discovery that you funded with your ice bucket challenge donations.  Here are some fast facts:

It's a gene.

It's important.

It's not a treatment.

It's one small piece in a gigantic puzzle that is literally missing too many pieces.

Ice bucket money and money from many other sources helped find this NEK1 gene that affects a small percentage of people with ALS..

There are lots of other identified genes and more are discovered all the time.

New knowledge is good.

It's not a treatment for anyone's grandparent or child or niece or neighbor.  It's not even close.

It's cruel when organizations with an eye on fundraising pitch a feel-good story to major news outlets that inevitably put the magic words "breakthrough" or "exciting" or "promising" in the text. Grandchildren or parents or aunts or uncles or neighbors read those and unrealistic hope erupts.  It's cruel.











Saturday, July 23, 2016

The Drips Don't Add Up

Yesterday we received a promotional infographic -- http://www.alsa.org/fight-als/edau/ibc-progress-infographic.html for "Every Drop Adds Up" (a registered trademark of the ALS Association).


One drip caught my eye --



Whoa. The CDC's ALS Registry had nothing to do with the ice bucket challenge.  It had been going on for years and is completely funded by taxpayers.  We advocates are sent by the ALS Association to Capitol Hill every May to request those increased and generous funds.  And in 2014 and 2015, the ALS Association itself actually got $659,451 from the CDC to promote the Registry per usaspending.gov.  That would have happened regardless of the ice.  And the total price tag on this "largest" project is well over $70,000,000 in taxpayer funds.

We got the first report on national ALS prevalence from this "largest" project in 2014, the year of the ice, and it identified just 12,187 people living with ALS in the entire country.  It asserted prevalence based on that number.  The ALS Association concurred with the report and its assumptions and has called the CDC's Registry a resounding success.  http://www.alsa.org/news/media/press-releases/atsdr-reports-first-data-set.html

Hold that thought.

Our information-seeking eyes moved to another drip --



The ALS Association (which serves only a subset of the total people with ALS in the United States) has personal contact with 15,000 people with ALS annually?

Whoops.  These drips certainly don't add up.

This makes the CDC's 12,187 publication look absurd.

This makes the CDC's well-paid contractor look ineffective at moving the 15,000 people it serves annually to self-enroll in the Registry.

This makes the ALS Association look complicit in promoting a project and its published data as successful and valid when it knows otherwise.

The parting drip --


It's past time to turn over some stones.



Sunday, July 10, 2016

I Dream

Sometimes when I want to write about something, I look through stock photos for the perfect picture for the blog.  Today I searched "dream" images.  There were hundreds about dreaming big, about reaching for the stars, about "if you can dream it, you can do it."

My dream is incredibly small.  It's not reaching for the stars.  It's about simple business 101.  It's about good project management.  It's what millions of workers do every day. It shouldn't even be a dream. It should be reality.  It's about a responsible, productive annual project oversight meeting.

There is no image for a dream this small.

I simply dream that --
  • Every person invited to this year's annual meeting for the CDC's ALS registry on August 3-4 will have read the meeting reports from the past decade's meetings in chronological order.  The annual meeting does not need to spend hours in basic orientation every year for those appointed to be the project's Advisory Committee.  Historically the meetings ramble and have led us to disappointing results despite all the back-patting.  This is serious business.  Be prepared.
  • Every person at the annual meeting will clearly state who invited him or her and what business relationships he or she has with other advisory meeting participants.
  • The CDC will present a detailed report of annual project expenses for the past three years and the budget status for the current year.  The cumulative expense also needs to be made public to the advisors.  Details, please (not broad category pie charts).
  • Project contractors will come prepared with meaningful metrics.  Good advisors make people sweat to present meaningful project metrics and not fluff at status meetings. Numbers of emails sent mean nothing.  Measure results.  I dream of sweat. 
  • Participants will speak candidly about registry completeness and design flaws.  Advisors will ask lots of questions and not let them go unanswered.
  • Advisors will challenge the status quo.  They will not be enablers.  Advisors make the same demands of this project that they would in their everyday business dealings.
  • All American citizens will be able to watch a new kind of oversight unfold live.
So I dream.  This should not be a dream.  This is business 101.  This is basic good governance.




Friday, July 8, 2016

Transparency Is The Friend of Good Public Stewardship


The ALS Registry Act, which many of us worked hard to have passed in 2008, allowed for the formation of an "Advisory Committee" which could exert a lot of influence on the direction of this huge government project.

In the past there has been an annual, invitation-only meeting of people who seem to serve the role of such an Advisory Committee. The selection of attendees is tightly controlled by the CDC and the ALS Association and the Muscular Dystrophy Association (the latter two are paid contractors on the project).

We receive the written reports from those meetings many months after they occur.

And to this day, a lot of very reasonable people find the deliverables from this project to be of questionable value and effectiveness relative to the price tag.  That makes the annual meetings very important.
  • In 2013 we really challenged the veil of secrecy around the annual meeting.  We could not find out attendee names in advance.  We could not view proceedings live.  
  • By 2014 the CDC decided to webcast the proceedings after a lot of prodding in social media.  This was a huge step in the direction of transparency where we could view the actual conversations and group dynamics and competencies live. There was no mechanism for us to submit questions, but we were happy with the positive baby step toward transparency.
  • One day of the 2015 meeting was also webcast and again, some sunshine was cast on the questions that were (and were not) asked and the answers that were (and were not) given.  The second day was blacked out for some reason.
After repeated inquiries about the 2016 meeting dates and webcast information, we got the following message yesterday from ALSsystemadmin@cdc.gov :
The dates for ATSDR’s Annual ALS Surveillance Meeting are August 3 – 4, 2016. The meeting will not be live streamed this year. The meeting will be recorded and posted on the National ALS Registry website at a later date following the meeting. The posting of the recorded meeting on the National ALS Registry website will be announced on the Registry website home page and through CDC social media channels.
This is troubling.  Now the CDC doesn't want us watching live.  Why?  Live proceedings can provide energy and conversation that can be quite valuable.  Why stifle that?

My response to the email was
The lack of a webstream of the annual meeting this year is very disappointing and a step backward in transparency.  I hope that those who made that decision will reconsider in the spirit of transparency and good public stewardship.
Thanks very much.
Please take a moment and send your thoughts to ALSsystemadmin@cdc.gov today. It's important. Thank you.