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…
For the first time, a genetic risk factor for myasthenia gravis (MG) has been identified that involves a gene — AGRN — coding for a protein directly involved in the activity of neuromuscular junctions (NMJs), which are impaired in MG, researchers report. The study, involving the genetic analysis of more than…
The National Organization for Rare Disorders, known as NORD, was named an official charity partner of the 2021 TCS New York City Marathon, which will be held Nov. 7 both in-person and online. “Supporting charitable causes and organizations are a long-standing tradition of the TCS New York City…
Differences in gut bacteria composition in people with myasthenia gravis (MG) may be a promising avenue to explore in developing new therapies, a study highlights. Findings suggest that these bacteria might contribute to disease onset and progression, its researchers wrote. The study, “Gut bacterial microbiota in…
We’ve all experienced a time in our lives when we missed an important event. Maybe work prevented us from attending a family get-together, or perhaps celebrations were too far away to attend. Regardless of the reason, we’ve all felt that disappointment about missing out on a significant occasion. For those…
An inflammation-associated protein called calprotectin is present at abnormally high levels in the blood of people with myasthenia gravis (MG), a new study reports. Data also suggest that levels of this protein might correlate with MG activity and severity, but further investigation is needed, according to its researchers. “There…
Lately, with the help of a new therapist, I’ve been making significant progress with my mental health. Looking forward to activities and planning for the future seems a little easier for me now, a year after my myasthenia gravis (MG) diagnosis. Still, as others with MG might understand, our minds…
The National Alliance for Caregiving, in partnership with Global Genes, has issued a free guidebook, available online, that offers resources and support for caregivers of children with rare diseases. “The Circle of Care Guidebook for Caregivers of Children With Rare and/or Serious Illnesses” was designed…
The European Medicines Agency (EMA) has agreed to review Argenx’s application requesting the approval of its lead candidate, efgartigimod (ARGX-113), to treat people with generalized myasthenia gravis (gMG). A regulatory decision is expected by mid-2022. “gMG is a severe, chronic and debilitating disease that can be unpredictable…
For as long as I can remember, my definition of success hasn’t wavered much. It didn’t matter if I was playing in a Little League game or preparing for a job interview, success always meant having the most, conquering others, and being the best. I could argue that my…
Get regular updates to your inbox.
