Often I wonder how some ALS organization employees or board members can be so out of touch. Are they not paying attention, especially to issues and concerns that are so apparent to people with ALS and caregivers and advocates on the internet?
We have a kind of solar system where organizations have placed themselves the shining stars of the internet, providing messaging and resources for those who orbit their sites. They build. People with ALS and caregivers come to orbit them. They occasionally stave off rogue planets that appear to go astray. The star shines at the center of its solar system and can burn off stray matter.
Who knows what those organizations and board members could be if they revolved online around people with ALS and caregivers for a change. You see, it's about PALS and CALS. With the tools that today's internet provides, we should all be orbiting the thoughts and needs of people with ALS and their caregivers. They really are the stars. Everyone should get in touch with that concept. Orbit them. Get in touch.