WASHINGTON — Next Wednesday, a cadre of ALS patients will gather for a protest outside the FDA’s headquarters in suburban Maryland with a clear message: “No More Excuses.”
The rally is being organized by a ragtag group of ALS patients who connected mostly through Facebook, and it’s far less a production than other efforts like the 2014 ice bucket challenge that swept around the world.
These protesters haven’t even established a formal organization or a website; some said they’ve never even been to a protest. There’s nary a poster board in sight, yet.
Maybe we should bombard our president about his signing this bill was great but it is dead in the water. He signed it, walked away, nothing happened. I am sick of talk and no action. Out vets need this, my daughter just was diagnosed two weeks ago and was basically told Go home and learn how to die!! This is not what I heard from the president when he signed the bill giving patients the Right to Try new drugs not approved by the FDA because everyone is in someone’s pocket. I think this has to stop. Money, as always, is the evil answer behind all this. I wonder if one of their families got a disease like this if they would get it. I know the answer to that question.
I asked Dr. Glass what he would do if he had ALS. He said “I don’t know”. I don’t believe he was being honest.
Diagnosed at Emory on 4/11/19
Love that the patient/caregivers are working to make things happen. ALS is a deadly disease but it is also a disease that slowly changes a person life and takes away their abilities. Let’s take it up a notch….and get working on therapies that can delay and maybe someday cure this terrible disease.
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