ALS Focus™ collects and maintains a database of evidence on people’s self-reported experiences living with ALS and caregiving for those with ALS in the United States, providing a direct lens into what is important to them. This data is publicly available for those focused on ALS research, advocacy and care to utilize in their work and inform their decision-making.
Once she was diagnosed with ALS, the determination she showed throughout her life immediately took hold. Her attitude was “let us fight”, and her motto instantly became, “So What, Now What!”
Today, we sit down with Stephen Winthrop, our newly elected Chair of The ALS Association Board of Trustees to hear his thoughts on the fight against ALS and the role of The ALS Association in that fight.
Accessing insurance coverage for durable medical equipment is critical for people with ALS. However, too many private insurers either refuse to cover or set up insurmountable barriers for patients who desperately need access to the equipment they need to survive. Learn from people living with ALS and their families around the country who are facing these difficult challenges every day.
This manual discusses what aspects of that task people with ALS may have difficulty with and provides possible ways to make the challenges smaller or to compensate by using adaptive equipment.
The Institute of Clinical and Economic Review, commonly known as ICER, has opened a review of AMX0035 to determine the cost-effectiveness of the drug. The ALS Association is committed to making sure ICER’s review does not discriminate against people with ALS and that its analysis does not prevent people with ALS from accessing promising treatments.
In 2010, Parker Beam, Master Distiller at Heaven Hill Distillery, was diagnosed with amyotrophic lateral sclerosis (ALS). Fighting silently for three years, he decided to announce his diagnosis publicly in 2013, along with his plan to bring more awareness to the topic. Working with company leaders at Heaven Hill, Parker came up with a creative idea that utilized his 56 years of Whiskey distilling expertise to aid in his new fight against ALS.
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.
We’re excited to kick off National ALS Awareness Month. The next 31 days will be dedicated to education about the disease and the work happening around the world to find a cure, and to advocating for people with ALS and their caregivers. This year, we’re asking you to Raise Your Voice to elevate the fight against ALS.
The ALS Association told the Secretary of the Department of Transportation (DOT) about the horrible experiences of ALS advocates when flying. This is part of our effort to make air travel safe and accessible for people living with ALS.