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.

Wednesday, June 22, 2016

Listening 1,2,3

Chapter 1

Nice.  It's always helpful to feel that you are being heard, and I always learn a lot from hearing the perspectives of others.  I registered.  I blocked time on my calendar.  I prepared some thoughts.

Chapter 2
A couple of hours before the call was to begin...

Well, bummer.  Caregivers who have lost loved ones to ALS have a lot of interesting perspective and experience to offer.

Chapter 3
I asked if I could submit comments for ALSA executives and trustees "listening" and was given this email address.

I submitted the following:

Below are two comments that I would like to have made on yesterday afternoon's Listening Tour call.  I hope that this perspective will be helpful to the executives and trustees who are listening. Thank you.

1. ALS Registry

The CDC’s ALS Registry has been a disappointment on many levels – from process to oversight to deliverables.  ALSA controls most of the oversight by being lobbyist-in-chief for the project funding and by influencing so many of the appointments to the annual meeting group. 
Please make a serious, tough, businesslike review of this terribly expensive project. 
It has few of the characteristics of a smart, effective disease registry as cited by a recent report from FasterCures.  Completeness is certainly an issue that clouds any ATSDR reporting from the registry.  The project has a classic case of scope creep and distracting gingerbread.  Delays are rampant (we’re still waiting for the second annual report due last summer) and they are sloughed off with “it’s the government” excuses.  Appropriations are never substantiated to advocates with budget details before we're sent to Capitol Hill to ask for yet another $10 mil.  Oversight is hardly independent, especially given the financial relationships among those at the annual meeting.

It’s easy for charities to develop blind spots.  Has ALSA simply become an enabler on a most expensive project that has failed to live up to what a registry needs to be in 2016?  Please take a look at this report as a comparison to what we get --

We need some accountability at all levels in this project.  $70 million+ is an obscene amount of money to have plowed into  something that has not delivered what we need in an ALS registry.  

2. ALSA Inspire "Community"

I don't understand why you have allowed the Inspire ALSA “support group and discussion community” (formerly known as the “virtual advocacy community”) to languish in the manner it has.
People needing support and answers stumble across that site, they see the ALSA logo, and they expect trustworthy help.  Instead they often get terrible or no advice and there is no active contribution from ALSA.  That’s misleading for people with ALS and caregivers, and they sure don’t need misleading. 
Putting up a “support group and discussion community” website and simply slapping your logo on it and stopping by every few weeks to censor inappropriate postings isn’t right.  Please just pull the plug on it.

 I hope that we receive the link to the transcript soon.  I would like to hear or read what others had to say.

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