Note: This story was updated June 30, 2021, to clarify that Exservan is placed on top of the tongue, not under it. Specialty pharmacy services for Exservan (riluzole), a twice-daily film that dissolves when placed on the tongue and approved to treat amyotrophic lateral sclerosis…
A previously unknown form of amyotrophic lateral sclerosis (ALS) — one with onset during childhood — is caused by mutations that alter the production of certain lipids (fat molecules), scientists report. “We found that a genetic form of the disease can also threaten children. Our results show for the first…
Cedars-Sinai Medical Center, in California, has been awarded an $11.99 million grant to support a clinical trial that will test specifically engineered neural progenitor cells as a potential therapy for amyotrophic lateral sclerosis (ALS). The work, funded by the California Institute for Regenerative Medicine, or CIRM, will build…
My husband, Todd, came down with a cold last week. At this stage of his ALS progression, any cold is life-threatening. His lungs fill up with mucus, and he needs me to push on his abdomen so he can cough it out. Todd had a sore throat and a runny…
In a response letter to The ALS Association, the U.S. Food and Drug Administration (FDA) has recognized the unmet therapeutic need of people with amyotrophic lateral sclerosis (ALS) and reaffirmed its commitment to the 2019 ALS clinical trial guidance. However, the agency did not provide any details about how it…
“He wants to give the answers but his words are only Answers to nothing … They think this is the answer, But their thoughts are only Answers to nothing.” — Midge Ure “And the vision that was planted in my brain Still remains Within the sound of silence.” —…
Largely due to going virtual this year, the annual HayesDavidson 5K (HD5K) charity run met its goal of raising £40,000 (nearly $56,000) for the Motor Neurone Disease (MND) Association. The event previously was held in Hyde Park in London. However, the switch to the digital format enabled more…
To help me get through the ups and downs of living with ALS, I’ve created several mental games. Perhaps they’ll help you, too. For example, when life around me isn’t cooperating, I imagine I’m in a driver’s ed training film. When my body isn’t following orders, I tell…
Mutations in the FUS gene, a common cause of amyotrophic lateral sclerosis (ALS), impair the regeneration and growth of motor neuron extensions toward muscle cells, according to a study using a new miniaturized human model of neuron-muscle interactions. These deficits, along with the reduced number of nerve-motor connections, were lessened by blocking…
Most unpaid caregivers in the U.K. have not had any breaks from their caregiving role during the COVID-19 pandemic, with nearly three-quarters reporting feeling exhausted, stressed, and anxious, according to a survey of more than 2,800 caregivers conducted by Carers UK. During the pandemic, carers lost a mean…
