My Recovery Plans Come to the Rescue

If you happened to read my column last week, you’re probably thinking I’m writing this while sitting on a sunny beach, gazing at the ocean, and sipping a tropical drink with a little paper umbrella in it. That’s because I wrote about my busy month filled with ALS-related events,…

Exposure to certain toxic compounds — including beta-N-methylamino-L-alanine (BMAA), formaldehyde, and heavy metals like manganese, mercury, and zinc — increases the likelihood of developing amyotrophic lateral sclerosis (ALS), according to a review paper. Its authors argue that with BMAA — a toxic compound made by algae — enough evidence…

Patient registries are a hot topic of rare disease research and many organizations are taking advantage of this resource by signing up their patient communities and connecting with researchers. Eric Sid, MD, program officer for the Office of Rare Diseases Research (ORDR), said it is difficult to estimate how…

University of Sydney neurologist Matthew Kiernan, PhD, has been granted the 2022 Sheila Essey Award for his groundbreaking research, aimed at providing earlier diagnoses and better treatments for people with amyotrophic lateral sclerosis (ALS). Kiernan, a world-leading expert in the field of ALS research, is the first Australian to…

A Phase 1 clinical trial investigating ProJenX‘s oral therapy prosetin in healthy volunteers and people with amyotrophic lateral sclerosis (ALS) has started dosing participants. The first-in-human PRO-101 trial is divided into three parts. In parts 1a and 1b, researchers will investigate the safety, tolerability, and pharmacokinetics of single and…

Haisco Pharmaceutical has acquired the exclusive rights to develop and commercialize Exservan, an oral film formulation of riluzole, for the treatment of amyotrophic lateral sclerosis (ALS) in China. Under the terms of the agreement, Haisco will be responsible for the potential regulatory submission and marketing of Exservan in China, while…

Figuring out how to manage each stage of ALS for my husband, Todd, is a challenge. Each time Todd experiences another loss, I scramble to find answers and resources. Our latest challenge was trying to get proper support for Todd’s Astral noninvasive ventilator. It doesn’t help that we…

“And you know that you’re over the hill, When your mind makes a promise that your body can’t fill.” This refrain from the Little Feat song “Old Folks Boogie” could have been written with ALS sufferers in mind. It partly portrays our truncated existence. It humorously depicts making the…

The ALS Association has formally objected to the use of two controversial measures of cost-effectiveness in the upcoming evaluations of AMX0035 and oral edaravone, which are being reviewed as treatments for amyotrophic lateral sclerosis (ALS) in the U.S. These cost-effectiveness measures fail to value the lives of ALS…

This month, I have a few ALS-related activities scheduled that in the past could have easily left me feeling exhausted. But now that I’m following my own advice, I know my recovery plan will let me sail through the month with ease. I’ve often discussed the ALS symptoms of…