With the goal of raising funds and awareness to improve care and find a cure for myasthenia gravis (MG), the Myasthenia Gravis Foundation of America (MGFA) is hosting the 2021 Coast-to-Coast Walk and 2740 Challenge on Nov. 13. The event, which will be held virtually this year,…
Growing up, for lack of a better term, is very weird. I no longer understand what’s cool or not, I now repeat phrases my mother says (“All of these rappers sound the same!”), and my lower back can’t handle my odd sitting positions anymore. I didn’t think I would stay…
A newly launched non-profit institute is seeking to advance research, and the development of new therapies, for people with rare diseases — a patient community with some of the largest therapeutic needs, but one that is often left behind. Named the Institute for Life Changing Medicines, the project was…
The flexible endoscopic evaluation of swallowing-tensilon test (FTT), a new diagnostic tool for myasthenia gravis (MG), can be used to distinguish people with swallowing difficulties due to MG from those having similar symptoms caused by other conditions, according to a new study. The study, “Detecting myasthenia…
A new service, Bionews Clinical is seeking to bring more patients into relevant clinical trials by helping all involved — scientists, pharmaceutical companies, people with diseases — regard these studies as part of continuing care. “Today what happens is that the conversation about patients participating in a clinical trial is not…
Like myasthenia gravis, being an introvert is a constant battle. I have been a wallflower for as long as I can remember. I never preferred group settings, particularly ones where I had to interact without my parents. As a child, it was easy to recognize that I was socially distinct.
Participation in clinical trials exposes rare disease patients to financial, physical, and emotional pressures, according to the results of a patient focus group series. “Rare disease trial participants are running an endurance race they are highly motivated to complete, but these incremental burdens negatively impact their ability or willingness to…
I try to be honest about my shortcomings, but I have always struggled with asking for help. If you frequent my column, you may have realized that I’ve been missing in action. I was struggling and pushing my body to the extreme, when all I needed to do was stop…
Treatment with Descartes-08, an investigational CAR T-cell therapy, markedly eased symptoms of myasthenia gravis (MG) in three patients participating in a Phase 1/2 clinical trial assessing the therapy’s safety and preliminary efficacy. “This is the first clinical trial of CAR T-cells for an autoimmune disease. Naturally, the first patients…
I’ve never been great at asking for help. Ever since I was a kid, I always thought that asking for help meant I wasn’t as smart as everyone else. I was also petrified to ask a question that others would laugh at. There wasn’t a certain event or moment…
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