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.

Sunday, July 15, 2018

Irony, Thy Name Is ALSA

From the mission statement: "... empower people affected by ALS to live their lives to the fullest."



Hold that thought.

On Thursday I attended ALSA's workshop related to the ALS FDA draft guidance document.  A remote webstream was also offered.

There were very specific rules for making comments at this workshop.

Fine.

In the days before the workshop, a man with ALS took the initiative to develop a questionnaire with some peers with ALS to provide actionable data to the workshop.  It was intended to be part of the commentary to be heard by the FDA as well as others at the workshop.  It could provide pertinent information from people affected by ALS to the ALS Association, clinicians, investigators, and drug developers as well as to the FDA.

He had over 600 responses to his questionnaire.  That is big considering he had a very short window of time to gather responses and he had absolutely no organizational support is soliciting participation.

He put together the interesting results and submitted them to the assigned official comments email address in advance of the workshop.

He was not available for the workshop on Thursday.  He had a lumbar puncture scheduled as part of his participation in a clinical trial.

At the workshop some of the emailed comments and questions were relayed to the group.

Neither this questionnaire nor its informative results were even mentioned.

Nobody took the time to describe it to the group.  Nobody simply emailed the pdf to workshop participants.  Nobody was thoughtful enough to empower a patient voice by simply reading part of his report.  He was completely ignored.

He was having lumbar puncture as part of his commitment to a clinical trial, for Pete's sake!

To "... empower people affected by ALS to live their lives to the fullest" could be as simple as reading from a report to give a person with ALS a voice on a day when he gave himself to clinical research.

Here is the report.  Included are detailed results of the survey, too.

https://drive.google.com/file/d/1WfN90fzJV-mGQd27kUbna2Pn0HSagOm3/view

"Compassion - Integrity - Urgency"

"People with ALS and their families come first."

"Empower people affected by ALS."

Ignore someone with ALS who worked to contribute to the workshop.

Irony.



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