ALS Association chapter executives from across the country held more than 250 meetings with members of Congress Wednesday as part of the Association’s annual “fly in” advocacy push. While the meetings generally occur in-person in Washington, D.C., this year’s discussions shifted to virtual platforms in response to the ongoing COVID-19 pandemic and emerging social distancing and shelter in place rules across the country.
Chief among the concerns of ALS advocates is making sure that legislation being drafted in response to the pandemic includes protections for people living with ALS and their caregivers, including protecting access to noninvasive ventilators and making sure people with ALS are not forced to wait five months to access Social Security Disability Insurance.
To hear an in-depth discussion of how the Association is advocating during the pandemic, listen to the latest episode of Connecting ALS.
Continue reading How The ALS Association’s is Pursuing 2020 Public Policy Priorities During the COVID-19 Pandemic
Members of the ALS community,
I want to provide you with an update on how The ALS Association is serving the ALS community as COVID-19 progresses. We know this is a concerning time for many and we want to assure you that we are continuing our urgent mission to find treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.
Continue reading March 17 Update from ALS Association President and CEO Calaneet Balas
Letter to Congress calls for swift action to expand access to health care and facilitate social distancing
The ALS Association cosigned a letter with 27 patient and consumer organizations calling on Congress to act decisively to slow the spread of the coronavirus that causes COVID-19, particularly among vulnerable populations.
People with pre-existing conditions are at increased risk of infection and adverse health outcomes from COVID-19. For this reason, it is essential that any legislative package taken up in the Senate ensures that the health care system has adequate capacity to provide necessary care to patients with pre-existing conditions and robustly addresses public health needs.
Continue reading ALS Association Joins Coalition Fighting to Protect Vulnerable Populations in Face of COVID-19