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1 week ago | 
myastheniagravisnews.com | Sarah Bendiff |Mark Harrington |Allen Francis
I recently made peace with the fact that we almost always judge the book by its cover. It’s just what humans do. We believe what we see. And having a disease that’s not always visible has been the biggest challenge of my life. I often look just tired enough to not be trusted with a full-time, high-pressure job, but not sick enough to be accepted in priority lines without getting questioned. I know I’m not alone in that, so it got me thinking: Can we control our appearance to make our lives easier?
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1 week ago | 
myastheniagravisnews.com | Shawna Barnes |Patricia Inacio |Allen Francis
“I’m watching you, Wazowski. Always watching.”If you’re a cartoon fiend like I am, you likely recognize that quote from “Monsters, Inc.,” said by Roz, an administrator. Roz has a gravelly, smoky rasp of a voice. I’ve used this character as an example of what I sound like when my vocal cords have decided they’ve had enough. While attending my cousin’s wedding recently, I finally had an epiphany of how to describe what it feels like — not just what I sound like.
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3 weeks ago | 
myastheniagravisnews.com | Allen Francis |Margarida Maia |Sarah Bendiff |Shawna Barnes
Yoga expert Vanda Scaravelli once said, “Movement is the song of the body.” Every person has a rhythm when they walk, move, or use mannerisms to communicate. Since my twin brother, Aaron, was diagnosed with myasthenia gravis (MG) in 1999 at 24 years old, his rhythms have looked a little different. I’m still learning about Aaron’s MG because, for many years, we left much unsaid. Aaron dealt with the stares his severe eye misalignment got by including sunglasses in his daily wardrobe.
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4 weeks ago | 
myastheniagravisnews.com | Sarah Bendiff |Mark Harrington |Shawna Barnes |Allen Francis
I discovered my love of cooking when I was 12. While I enjoyed every part of my learning journey, my mom didn’t fully trust me in her kitchen, so I didn’t get to cook very often. I still live with her, so cooking for me is a rare occasion, which means that when she finally allows me to take over, I get a little too excited. Unfortunately, myasthenia gravis (MG) likes to remind me that things will never be as easy as they used to be.
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1 month ago | 
myastheniagravisnews.com | Lindsey Shapiro |Margarida Maia |Allen Francis |Patricia Inacio
A digital tool developed by BioSensics for remotely monitoring myasthenia gravis (MG) symptoms was found to be feasible in a small clinical study. BioDigit MG includes various assessments that can be completed on a tablet, along with wearable sensors to collect information about physical activity and posture in daily life.
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1 month ago | 
myastheniagravisnews.com | Allen Francis |Steve Bryson |Mark Harrington |Shawna Barnes
I started traveling as a backpacker when I was 19 years old, back in the 1990s. I spent a semester studying in London in 1997. As a naive kid from the South Bronx in New York City, I found it mind-blowing to be in countries where people spoke English but had such heavy accents that I couldn’t understand them. I was also a lot more outgoing back then; I’d go out of my way to say hello to strangers and try to strike up spontaneous conversations.
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1 month ago | 
myastheniagravisnews.com | Margarida Maia |Andrea Lobo |Allen Francis |Patricia Inacio
Dosing has started in the first group of healthy adults participating in a clinical study of S-1117, a candidate treatment Seismic Therapeutic designed to break down harmful self-reactive antibodies in autoimmune diseases like myasthenia gravis (MG). Running at a single site in Australia, the Phase 1 clinical study (NCT06828393) is recruiting up to 96 adults, ages 18-65, who are in good physical and mental health.
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1 month ago | 
myastheniagravisnews.com | Lindsey Shapiro |Allen Francis |Margarida Maia |Marisa Wexler
More than two years of treatment with Zilbrysq (zilucoplan) continues to be associated with sustained clinical responses in adults with generalized myasthenia gravis (gMG), according to interim analyses of the long-term Phase 3 RAISE-XT extension study. These new findings, consistent with earlier interim trial analyses, were presented in a pair of posters at the Muscular Dystrophy Association’s (MDA) Clinical & Scientific Conference running March 16-19 in Texas and virtually.
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1 month ago | 
myastheniagravisnews.com | Lindsey Shapiro |Marisa Wexler |Allen Francis |Andrea Lobo
The U.S. Food and Drug Administration (FDA) has approved the expanded use of Soliris (eculizumab) for treating children with generalized myasthenia gravis (gMG), ages 6 and older, who are positive for antibodies against the acetylcholine receptor (AChR). The infusion therapy marketed by Alexion, AstraZeneca Rare Disease was first approved in the U.S. in 2017 for adults.
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1 month ago | 
myastheniagravisnews.com | Allen Francis |Katherine Poinsatte |Thomas Bartlett |Margarida Maia
Do you ever use a phrase often without fully appreciating its meaning, especially its meaning to others? I’ve been thinking about the phrase “seeing double” for some time. My twin brother, Aaron, was diagnosed with myasthenia gravis (MG) in 1999, and he lives with a lot of its symptoms, such as muscle weakness. Since stress and anger can cause MG flare-ups, he’s spent decades learning how to mitigate both. He hasn’t been able to work since his diagnosis.
