This month, we’re sharing three outstanding ALS caregiver resources – Your ALS Guide, Sarah’s Caregiver Community, and I AM ALS -that we are thankful for and that you need to know about. Your ALS GuideThis practical, easy-to-navigate website and Facebook community was designed for patients, family members, caregivers, and friends to answer questions, connect them […]
Medical advocacy
Great News! Congress Passed the ALS Disability Insurance Access Act
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 […]
2020 ALS Advocacy Conference Debrief (Part 2)
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 […]
