Lately we have seen hints of what may well be the largest expanded access program for an ALS drug candidate and we have seen many suggestions for FDA legislation and government funding. We continue to have a large U.S. ALS Registry project with a dearth of status information. Talk about a mother lode of question material!
We have opportunities to enlighten one another and engage in discussion that will improve the fight, and there surely is a large amount of room for improvement in that fight.
As long as ALS organizations ask for people to follow, they should be willing to engage in some public conversations that will help people understand and contribute to the journey with their ideas. Organizations don't have to offer perfect solutions, but they should be willing to discuss what may be imperfections so that they have informed constituents.
Questions aren't all bad, and Sleepy does not mean to seem dopey.
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