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1 month ago | 
alsnewstoday.com | Marisa Wexler |Patricia Inacio |Forest Ray |Mary Chapman
A bipartisan team of lawmakers in the U.S. House of Representatives and Senate is pushing for legislation to help ensure that spouses of veterans who die from amyotrophic lateral sclerosis (ALS) have access to benefits. The Justice for ALS Veterans Act was introduced in the House by Brian Fitzpatrick, a Republican who represents Pennsylvania’s first district, and Chris Pappas, a Democrat from New Hampshire’s first district.
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1 month ago | 
smanewstoday.com | Lindsey Shapiro |Patricia Inacio |Kevin Schaefer |Mary Chapman
Last updated March 3, 2025, by Agata Boxe Fact-checked by Patrícia Silva, PhDSymptoms of spinal muscular atrophy (SMA), such as breathing problems and muscle weakness, can make it difficult to get a good night’s rest. SMA is a rare neuromuscular disease that is usually caused by mutations in the SMN1 gene. There are several different types of SMA.
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1 month ago | 
fapnewstoday.com | Margarida Maia |Marisa Wexler |Mary Chapman
Throughout March — Amyloidosis Awareness Month — the Amyloidosis Foundation is inviting the public to join its “Light the Night for Amyloidosis” campaign, increasing awareness about a group of rare diseases that includes familial amyloid polyneuropathy (FAP). People are asked to brighten the entrance or features of their home in red, the initiative’s official color. Red light bulbs are available for purchase at the foundation’s online shop.
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2 months ago | 
alsnewstoday.com | Margarida Maia |Dagmar Munn |Mary Chapman |Susie Strachan
Fifteen nonprofit organizations across the U.S. formed a new ALS group, ALS United, to better address the needs of people living with amyotrophic lateral sclerosis (ALS) and drive advances in research toward better treatment options or a cure. The groups said they plan to pool resources to support and advocate for patients and their families at the state and national levels, and to promote research efforts worldwide.
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2 months ago | 
alsnewstoday.com | Margarida Maia |Mary Chapman |Kristin Neva |Steve Bryson
It takes longer for people with amyotrophic lateral sclerosis (ALS) who are being treated with Radicava (edaravone) to reach certain disease progression milestones, such as using a walking aid or a wheelchair, compared with those not treated with the medication. A study of real-world data also indicates the proportion of patients on Radicava who died over two years (43%) was also nearly halved compared with the proportion of deaths in the control group (75.9%).
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Jan 23, 2025 | 
alsnewstoday.com | Kristin Neva |Margarida Maia |Dagmar Munn |Mary Chapman
For more than a decade living with my husband Todd’s ALS, I’ve been the finder and procurer of equipment that makes both of our lives better. Since disease progression has made travel to our closest ALS clinic too difficult, we’ve had to figure out how to manage the disease without the help of medical professionals with ALS expertise. Thankfully, I’ve found a supportive online community on ALS Facebook groups, where users point out solutions to the problems we encounter.
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Nov 8, 2024 | 
ajmc.com | Mary Chapman |P. Charles |Josie Cooper |Arwen Struthers |Amanda Conschafter |Gavin Clingham
PublicationArticleNovember 8, 2024The American Journal of Managed CareNovember 2024Author(s):,This survey assesses physician experiences with utilization management and burnout and investigates whether there is a link between them. ABSTRACTObjective: This study was designed to assess physician experiences with utilization management and burnout and investigate whether they are linked.
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Nov 7, 2024 | 
alsnewstoday.com | Esteban Cerezo |Mary Chapman |Shayna Korol |Dagmar Munn
The government of Ontario has committed CA$13 million (around $9.36 million) over three years to provide critical and comprehensive care to people with amyotrophic lateral sclerosis (ALS) who live in the Canadian province. The funding, which was announced in Ontario’s 2024 Fall Economic Statement, will help support the new Ontario Provincial ALS Program meet the needs of the roughly 1,400 residents of Ontario living with ALS.
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Nov 6, 2024 | 
alsnewstoday.com | Esteban Cerezo |Kristin Neva |Andrea Lobo |Mary Chapman
Leal Therapeutics has raised $45 million to continue advancing its pipeline of drugs for diseases of the brain and spinal cord, including a promising new therapy for amyotrophic lateral sclerosis (ALS). The financing round, which follows an earlier $39 million investment, will help Leal move its two lead assets — LTX-002 for ALS and LTX-001 for schizophrenia — into clinical trials, while continuing to expand its pipeline and advancing early-stage drugs into preclinical studies.
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Oct 24, 2024 | 
liverdiseasenews.com | Marisa Wexler |Mary Chapman |Lindsey Shapiro
The safety monitoring committee of a Phase 2a clinical trial testing zetomipzomib in people with autoimmune hepatitis has found no major safety issues with the experimental therapy to date, and recommends the study proceed without modification.
