Unlike most Medicare recipients who need extensive home care and rehabilitative services, people with ALS do not improve, and the intensity of their service needs increase over time. That means standard Medicare cost control approaches don’t work well. I will discuss two examples.

Telehealth has been an important element in U.S. health care for decades, but the COVID-19 public health emergency has put a spotlight on the need to maintain and expand access to telehealth to ensure everyone can receive appropriate care when and where they need it.

After Amylyx’s announced that it intends to file a new drug application for AMX0035, The ALS Association immediately called on the U.S. Food and Drug Administration to approve the treatment for all people with ALS as soon as possible. Connecting ALS talked to the team at Amylyx to learn about the path ahead for access to AMX0035.

We recently talked with Kaiden Anderson to learn a little more about his personal connection to ALS, what receiving the scholarship means to him, and his future plans in healthcare.

There is a lot to do, and this grounded focus of making ALS livable helps us hold everyone—ourselves, the FDA, and the research community—accountable to real impacts on real people with ALS and the time it takes to deliver those impacts. This week has been a big step forward for the ALS community, and we will continue urgently working to keep the momentum going.

We recently talked with Emma Thompson, one of this year’s award recipients, to learn a little more about her personal connection to ALS, what receiving the scholarship means to her, and her future plans in nursing.

We recently talked with Dr. Yichen Li, postdoctoral fellow from the Ichida Lab at the University of Southern California to learn about her unique project focused on the efficacy of suppressing a gene called SYF2 as a therapeutic strategy for diverse forms of ALS. 

We recently talked with Ally Halverson, one of this year’s award recipients, to learn a little more about her personal connection to ALS, what receiving the scholarship means to her, and what her future plans are in healthcare.

Dr. Jeffrey Rothstein, professor of neurology and neuroscience and the founding director of the Robert Packard Center for ALS Research at Johns Hopkins University School of Medicine, and Dr. Alyssa Coyne, a postdoctoral fellow at Johns Hopkins, discuss their recent publication of research identifying a cellular defect common in ALS and what it means for research into the disease going forward.

The physical impact of living with ALS presents multiple challenges for those diagnosed and their families as the disease progresses. With the help of innovative technologies, some facilities around the country are finding creative ways to do whatever it takes to make ALS a livable disease.

Taking the time to understand the disease’s progression and make plans to deal with the physical impact can help ease the burdens faced by people living with ALS and their caregivers, helping them live longer, stronger, more independent lives.

Our ALS Certified Centers and clinics around the country are committed to doing whatever it takes to provide the best possible multidisciplinary care and support for people living with ALS and their families. Their dedicated teams of healthcare professionals are specially trained to address their patient’s needs, allowing them to receive care from each discipline during a single visit. Recently we caught up with Angel Preece, registered nurse and clinic coordinator at The Neuromuscular Center at Hospital for Special Care, ALS Center of Excellence, in New Britain, Connecticut and she shared what it is typically like to visit their clinic, interact with her team and receive collaborative care from numerous clinicians during one appointment.

We recently spoke with Nishal to learn more about him and his unique project focused on providing an assistive communication device for people with severe speech and motor impairment due to ALS using an intracortical Brain Computer Interface (iBCI).

As we continue to do whatever it takes to make ALS a livable disease, we are sharing some of the many resources we have available for the ALS community to help educate, inform and guide you through the ALS journey.

An ALS diagnosis is a devastating diagnosis in and of itself, but to learn your loved one has FTD as well can make it even more challenging to comprehend.

“How should I live my life?" Sadly, I don't have an answer to this question, only you can answer this question for your life, but I do have five points which may help you.

Thanks to the tireless efforts of ALS advocates across the country, the House included many of our aggressive requests for new and increased investments in research to find treatments and a cure, slow symptom progression, reduce the number of new cases, and increase the length and quality of life for every American living with ALS.

The ALS Association and the U.S. Department of Veterans Affairs (VA) have entered into a partnership to help improve the lives of Veterans living with ALS by increasing the number of Veterans Health Administration (VHA) clinics that are designated as Certified Treatment Centers of Excellence and Recognized Treatment Centers.

In very powerful testimony, members of the ALS community asked members of Congress to ensure the FDA acts with greater speed and regulatory flexibility during a hearing before the House Energy and Commerce Health Subcommittee.

Across the country, teams of health care professionals specially trained to address the needs of people living with ALS are doing whatever it takes to provide the specialized care and support their patients require.