News

Deborah skydives over Longmont, Colorado. (Photos courtesy of Deborah White) This is Deborah White’s story: After several months of sporadic double vision, I started to experience drooping eyelids while on a business trip. A concerned co-worker took me to the emergency room where the physician recommended that I…

Descartes-08, an investigational RNA-based CAR T-cell therapy (rCAR-T), safely eased disease symptoms for up to nine months after treatment among 14 adults with generalized myasthenia gravis (gMG) taking part in a Phase 1b/2a clinical trial. The open-label MG-001 trial (NCT04146051), now a recruiting Phase 2b study, is the…

(Photos courtesy of Jennifer Thompson) This is Jennifer Thompson’s story: When I signed up to share a specific way in which myasthenia gravis (MG) has affected me, I had to really pause and pray. Wow! Living with MG takes a toll in so many different ways, it…

The U.S. Food and Drug Administration (FDA) has approved rozanolixizumab, under the brand name Rystiggo, to treat adults with generalized myasthenia gravis (gMG) who have antibodies against the acetylcholine receptor (AChR) or muscle-specific tyrosine kinase (MuSK) proteins. Rystiggo is now the only FDA-approved therapy for patients with anti-AChR…

(Photo courtesy of Kathi Timothy) This is Kathi Timothy’s story: As a child, I remember pleading with my mother to please believe me. Believe me that I will clean my room after I go to a friend’s house. Believe me that I really did study. Believe me. Decades later,…

A branch of the European Medicines Agency (EMA) recommended that the approval of Soliris (eculizumab) be expanded to include children and adolescents, ages 6 to 17, with generalized myasthenia gravis (gMG) who are positive for antibodies targeting the acetylcholine receptor (AChR) — the most common type of MG-driving…

(Photo courtesy of Andrea Barlass) This is Andrea Barlass’ story: Living with myasthenia gravis (MG) has been interesting, for the lack of a better word. Despite the amount of research I did after I was diagnosed, no amount of information could have prepared me for how…

Michael and Carmel. (Photos courtesy of Michael Adam Weinberg) This is Michael Adam Weinberg’s story: I might’ve found myself solo, still meandering lost on this winding, never-beaten path of life, without my myasthenia gravis diagnosis and the consequential medical challenges I’ve faced over the past 17 years.

With MG, Siobhán Mattison says she looks well and can walk — until she can’t. Her kids never mind the ride, though. (Photo courtesy of Siobhán Mattison) This is Siobhán Mattison’s story: I’ve had autoimmune symptoms for much of my life, but I never thought much about it.

Pearl Moffett had a myasthenia crisis at age 48, following a diagnosis of chronic lymphocytic leukemia. (Courtesy of Pearl Moffett) This is Pearl Moffett’s story: My experience with myasthenia gravis (MG) opened my eyes to the suffering that a chronic illness can bring. …