ALS Advocacy Efforts Roll On

We all know those tasks that are never done. There is always more laundry to do, same with the dishes. And sure, the lawn mowing takes a break for the colder months, but come spring the grass will be growing again. Which is not to say that all tasks that are never done are necessarily unpleasant. Taking the dog for a walk can be enjoyable for both human and canine. Pulling weeds from the garden has a certain Zen attraction for many.

ALS advocates had reason to celebrate in December 2021 with the passage and signing into law of the Accelerating Access to Critical Therapies (ACT) for ALS Act, but there has been no time to wait as 2022 moves along with many policy priorities still on the table. For ALS advocates, there is always more to do.

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Winter 2022 ALS Research Round Up

We’ve talked before here about how research is incremental. How one small discovery leads to another discovery, which informs the direction of another study. But while research progress can at times seem slow, that should not be mistaken for a lack of urgency among those doing the research. In fact, the ALS Association has recently made the case to an important arm of the U.S. government that it wants their help in moving ALS research forward even faster.

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New Drug Treatment Shows Significant Benefit for People with ALS

These days, it seems everything is “news.” Or at least there needs to be enough “news” to fill the 24 hour news channels, your Facebook and Twitter feeds, and who knows how many website devoted to covering the “news.”

But in a time when everything claims to be “news,” it can be hard to tell when something genuinely newsworthy occurs. When we really ought to break out the “Breaking News” banners and pay attention.

For the ALS community, just such an event took place earlier this month, when the New England Journal of Medicine published encouraging clinical trial results showing that Amylyx Pharmaceuticals’ AMX0035 brought statistically significant benefit to people living with ALS. The study showed that AMX0035 decreased the rate of decline in the Revised ALS Functional Rating Scale (ALSFRS-R). The trial included 137 people with ALS and was conducted across 25 top medical centers through the Northeast ALS (NEALS) consortium.

People with ALS who received AMX0035 performed 2 points better on the ALSFRS-R compared to those who received the placebo. This is a statistically significant result, and in the real world could mean the difference between a person with ALS being able to feed themselves versus being fed, or the difference between needing a wheelchair versus not needing one.

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