This is a proposal from us, patients living with ALS.
I’ve heard that the Alliance began with a focus on patients and their families.
At present, however, it seems that a lack of consideration of patient participation has led to patients being left out, and the focus has shifted to scientists and researchers.
Today we would like to propose returning to our original purpose and creating a truly patient-centered organization.
In order to be patient-centered we must pursue both the establishment of methods of treatment and the securing of good living conditions / daily care with equal vigor.
For patients to participate in this meeting they must have excellent caregivers and must bear a very large financial burden. Neither of these requirements are by any means easy to meet.
We therefore ask that the Alliance do the following:
1) While patients themselves continue to pay the meeting participation fee, make the caregivers they need in order to participate (however many that may be) exempt from payment.
2) Run the meeting in a way that makes it easier for patients and people whose first language is not English to speak and understand. Specifically,
-Translate important information on the website into member languages.
-Provide simultaneous interpretation booths/headsets at the Alliance meeting for member organizations that request them free of charge.
-Make interpreters exempt from Alliance participation fees.
We hope these requests will be heard and reflected in how future meetings are run.
We hope our specific requests will be met at next year’s meeting. If they are not, it will be difficult for us to see the point of belonging to this organization. Please try to understand our position.