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ALS Association
Noninvasive Ventilators Removed from Competitive Bidding in Big Win for ALS Community
The Medicare program at the Centers for Medicare & Medicaid Services removed noninvasive ventilators from competitive bidding for durable medical equipment. The decision will keep the devices out of competitive bidding for at least three years and is a victory for ALS advocates. The ALS Association and its partners have led an intense lobbying campaign against competitive bidding for noninvasive ventilators for more than a year. The Medicare program cited COVID-19 in announcing the move.
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ALS Association
Fight for SMART COVID-19 Legislation Continues
With congressional leaders scheduled to begin work on additional stimulus legislation in response to the COVID-19 pandemic, The ALS Association is continuing to push to include protecting access to noninvasive ventilators (NIV) and to making sure people with ALS can access their Social Security Disability Insurance (SSDI) in the coronavirus response packages.
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ALS Association
How The ALS Association is Pursuing 2020 Public Policy Priorities During the COVID-19 Pandemic
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. 
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ALS Association
The Jane Calmes ALS Scholarship Fund Kicks Off Year Two
The ALS Association is accepting applications for the Jane Calmes ALS Scholarship Fund, which was established in 2019 to support post-high school education for students whose lives have been impacted by ALS. Scholarship recipients receive up to $5,000 per year to help cover the cost of education.
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ALS Association
Questions and Answers about COVID-19 and Its Impact on People with ALS
March 23, 2020 – We have received many questions about COVID-19 and its impact on people with ALS, their families, and their caregivers. We convened a panel of volunteers and staff to answer these questions – their bios are at the bottom. This situation is rapidly changing. We will update this FAQ as we receive more questions and more current information.
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ALS Association
Medicare Coverage for Telehealth Visits Expanded During COVID-19 Pandemic
In response to congressional action, The Centers for Medicare and Medicaid Services notified providers of a new option for expanded Medicare coverage for telehealth visits.  These changes temporarily remove originating site and geographic restrictions from coverage of telehealth under Medicare fee-for-service. 
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ALS Association
Target ALS and ALS Association Announce New TDP-43-Focused Biomarker Initiative
Target ALS and The ALS Association recently announced a new partnership committed to the discovery of biomarkers for ALS. Structured as a precompetitive initiative between scientists in academia and the pharmaceutical/biotech industry, Target ALS and The ALS Association will fund two projects to better understand the chemical and physical structure of the TDP-43 protein, which is present in most cases of ALS.
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ALS Association
March 17 Update from ALS Association President and CEO Calaneet Balas
This is a rapidly evolving situation and The ALS Association will continue to update you on how we are serving the ALS community throughout COVID-19. For the most recent information about COVID-19, The ALS Association recommends visiting the CDC and the World Health Organization (WHO) websites.
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ALS Association
A Deeper Look into ALS Association Efforts to Speed Approval of Gene Therapies
We are getting enthusiastic feedback and questions about our partnership with Project ALS to fund a clinical research project for jacifusen, an experimental therapy being developed at Columbia University’s Eleanor and Lou Gehrig ALS Center for FUS-associated ALS. We thought it would be helpful to describe the strategy underlying the project.
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ALS Association
Susan Hoerber’s Journey of Hope
Two days before her birthday in January 2018, Susan Hoerber was diagnosed with ALS. “I was symptomatic for about four years. I knew there was something terribly wrong,” she said. Susan first noticed her symptoms when she struggled to hold a fishing pole. “I was an avid fisherman and outdoors person,” she said. “That's the first time I got kind of scared and I went to the neurologist.”
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