NCART Now Sharing Updates Via YouTube The National Coalition for Assistive & Rehab Technology (NCART) has created a YouTube channel. In an April 3 newsletter to stakeholders, NCART — @NCART-CRT — introduced the channel. Its first video is a greeting from Executive Director Wayne Grau, who said, “This is an incredible opportunity to share with…
Briefly: NCART Joins YouTube; ALS Treatment Withdrawn After Trial Results
Penn State Wins Grant to Investigate ALS Speech Communications Possibilities
Researchers are studying how people with ALS communicate with partners and caregivers.
A new five-year, $3.1 million grant from the U.S. National Institutes of Health (NIH) will fund a Penn State University project to investigate ways to improve speech communications for people with amyotrophic lateral sclerosis (ALS). Specifically, researchers are focusing on how people living with ALS communicate with their “communication partners,” including spouses and family members,…
Study: Abnormal Proteins Found in Spinal Fluid of ALS Patients
The new findings could help to diagnose amyotrophic lateral sclerosis in the future.
Researchers at the National Institutes of Health (NIH) have discovered abnormal proteins in the spinal fluid of people who have amyotrophic lateral sclerosis (ALS). In a Jan. 31 announcement, the NIH said the new findings could help diagnose ALS going forward. The research was published in Science Translational Medicine. Researchers discovered that the abnormal proteins…
Briefly: Team Gleason Adds an Advocate; ALS United Shares Ideas
Featuring Team Gleason and ALS United AT Chat.
Team Gleason Adds Director of Development Katherine O’Hagan has joined Team Gleason as its Director of Development. A Jan. 12 social media post said O’Hagan has more than 20 years of fundraising experience. “Her passion for our goal to revolutionize the ALS landscape is evident, and we are excited to welcome her to the team,”…
Researchers Find Genetic Mutation Cause for Juvenile-Onset ALS
Genetic mutations account for 40 percent of juvenile-onset cases.
Researchers have found a previously unknown genetic mutation in two young people with juvenile-onset amyotrophic lateral sclerosis (ALS). In a study published in the Journal of Neurology, Neurosurgery and Psychiatry, an international group of researchers discussed two patients who were unrelated to each other and presented with “early-onset progressive proximal and distal muscle weakness, oral…
FDA Approves Treatment for SOD1 ALS
The new treatment is for people whose ALS is caused by a known genetic mutation.
The U.S. Food & Drug Administration (FDA) has approved a treatment for people with amyotrophic lateral sclerosis (ALS) caused by a mutation in the superoxide dismutase 1 (SOD1) gene. The FDA described Qalsody (also known as tofersen) as “an antisense oligonucleotide that targets SOD1 mRNA to reduce the synthesis of SOD1 protein.” Qalsody is administered…
Survey: People with ALS Report “Acceptable” Quality of Life
Respondents reported on their priorities and worries.
A new survey of people living with amyotrophic lateral sclerosis (ALS) in nine European countries asked about their priorities and how ALS has changed their lives. The study — “IMPACT-ALS: Summary of results from a European survey of people living with ALS” — was published in Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration in September. In…
Briefly: Miller’s Is Hiring; MS Research Discusses the Impact of Obesity
Featuring Miller’s and researchers at Karolinska Institutet.
Miller’s Is Hiring an HR Manager Miller’s is looking for a Human Resources Manager. In a social media post on X, @Johnny_Millers said, “We are seeking a high-energy and caring person to lead Miller’s Human Resources department. In this role, you will perform a variety of tasks, including interviewing/recruiting, employee benefit management, policy design and…
Barrow Neurological Institute Wins ALS Grant
The grant’s goal is to create an Access for All in ALS Consortium.
The National Institutes of Health (NIH) has awarded Barrow Neurological Institute a grant “to help create and lead a ground-breaking and transformative national amyotrophic lateral sclerosis (ALS) clinical research consortium,” Barrow announced in an Oct. 5 bulletin. The grant — with a first-year budget of $16.7 million — was awarded “to create the Access for…
AAHomecare: Medicare Advantage Plans Unfairly Restricting NIV Coverage
MA plans are swapping Respiratory Assistance Devices for Non-Invasive Ventilation devices.
The American Association for Homecare (AAHomecare) and the ALS Association are continuing their collaborative work on the issue of Medicare Advantage (MA) plans unfairly restricting coverage for non-invasive ventilation (NIV) devices. In an Oct. 13 update, AAHomecare said it partnered with the ALS Association to discuss these concerns with the Centers for Medicare & Medicaid…