Many years ago at the big ALS advocacy conference session where advocates were being briefed on the ALS Registry legislative request, a woman at a table toward the back of the room near me asked a question on some numbers. Instead of getting an answer, she receive a response that it wasn't necessary for her to get lost in the weeds of the details. It was only important for advocates to know the request and some bullet points when meeting with legislators. And just tell your stories.
I muttered to myself, "Answer the question."
She muttered loud enough for me and others to hear, "Don't you worry your pretty little head."
And so it goes in the fight against ALS. People with the disease and their caregivers never quite break through that "don't you worry your pretty little heads" mentality to become valued members of policy and research discussions. They are the experts on ALS, and they are often kept on the bench, only to be called into action to tell their stories or raise funds.
In the last few weeks we have seen some remarkable people with ALS who have refused to wait silently for action, and I think they have been impressive examples of how much people with ALS and their caregivers have to contribute, and quite frankly, to improve the fight.
And there are many more if we choose to pay attention. It's a rich, diverse, talented, competent asset of thoughtful voices who understand ALS like nobody else.
PALS and CALS have questions, ideas, and concerns. They must be respected and valued for their questions, ideas, and concerns.