Last week, both the Senate and the U.S. House of Representatives passed the ALS Disability Insurance Access Act. This news marks a tremendous milestone for the ALS community. The legislation eliminates a mandatory five-month waiting period that up to this point has been in place for people with medically-determined ALS to receive Social Security Disability Insurance (SSDI). Imagine that you have been […]
This year’s ALS Advocacy Conference, put on by the ALS Association, looked a bit different in 2020 over computer screens and Zoom links, as did everything else this year. But as the resounding rally cry of the conference went, “ALS does not stop, and neither can we.” Many things have been postponed or cancelled this […]
Did you miss the 2020 Virtual ALS Advocacy Conference? Here’s a breakdown of the conference sessions to help you catch up, stay informed, and advocate on your time!
“Lou Gherig was diagnosed 80 years ago,” Christa Thompson reminds us, “and his doctors essentially had the same story to tell him that my husband’s doctor told us.”
Jeremy Van Tress’ ALS story.
Gone are the days of relying on hand gestures and a white board.
“The mission of SimpliHere is to help patients and families impacted by neurodegenerative diseases such as ALS preserve their ability to communicate, cope, and stay connected to the wider community.” During her mother’s battle with ALS, our founder Joanna Rosenberg saw first-hand how easily it is for ALS patients to lose touch with their immediate […]
When you’re deep in the trenches of ALS, your perspective is thrown all out of whack. You’re doing everything you can to keep your PAL happy and comfortable, you’re worrying if you’re doing more harm than good, and half the time you’re making it up as you go along (because, let’s face it, ALS throws […]