While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket costs for prescription medicines and access to affordable comprehensive care — still need attention. Those were the findings of the…
News
An imaging technique, called 31-phosphorus magnetic resonance spectroscopy (MRS), can be used to assess mitochondrial abnormalities in people with amyotrophic lateral sclerosis (ALS), a new study demonstrates. This non-invasive procedure could be useful for evaluating potential ALS treatments, researchers suggested. The study, “Magnetic resonance spectroscopy…
As a new U.S. Congress prepares to start the annual process of determining funding for federal programs, the ALS Association is asking its advocacy network to press their legislators to expand support for research in amyotrophic lateral sclerosis (ALS). “This year, the ALS Association will aggressively pursue new and…
Abnormalities in the activity of the protein TDP-43, whose gene is often mutated in amyotrophic lateral sclerosis (ALS), can increase DNA damage in cells, a study shows. These findings shed light on the molecular underpinnings of ALS, and may open new avenues for treatment, its researchers said. The study,…
People with amyotrophic lateral sclerosis (ALS) who use melatonin have better survival outcomes and experience slower disease progression, a new analysis indicates. The findings suggest that melatonin may be beneficial for people with ALS. However, because the analysis was not designed to find cause-and-effect relationships, further studies are needed,…
Work into moving M102, an investigative treatment for amyotrophic lateral sclerosis (ALS), into testing in people has been given a boost by a £1.6 million research grant awarded to Aclipse Therapeutics and the…
A patent application allowing MediciNova to use its investigational therapy ibudilast (MN-166) in combination with riluzole to treat people with amyotrophic lateral sclerosis (ALS) has been approved for issue in Japan. The patent request filed with the Japan Patent Office covers a wide range of oral doses and dosing…
Mitsubishi Tanabe Pharma America (MTPA) has entered an agreement with Aquestive Therapeutics to market Exservan, an oral film formulation of riluzole, for treating amyotrophic lateral sclerosis (ALS) in the United States. Under terms of the agreement, Aquestive — the developer of Exservan — will be the exclusive manufacturer and…
People with amyotrophic lateral sclerosis (ALS) and other motor neuron diseases (MNDs), as well as their caregivers and healthcare professionals, are being recruited across the U.K. to provide input for the development of a web-based tool to help patients decide if they want a feeding tube. Patients are being…
Boston Children’s Hospital (BCH) is renaming its amyotrophic lateral sclerosis (ALS) Augmentative Communication Program to the Jay S. Fishman ALS-Augmentative Communication Program at Boston Children’s, the hospital announced. Fishman was CEO of the American insurance firm Travelers Companies. A vocal…
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