» On 9/01/2026 12:00:00 AM Mountain Standard Time, Alan wrote:
R.I.P. Dr. Katie Amatruda (11May1954-21May2026, 72yo). 

I met Katie in a Myasthenia Gravis support group on Facebook, back in January. She said she was also involved with a clinical trial, and they were using CAR T-cell therapy, which includes genetic modification. A few months later, I was shocked to hear that she had passed away.

After talking with Katie's family, I started reading her postings in various MG support groups on FB and pieced together a rough idea of her final months. She had severe back pain in the fall of 2024, and was eventually diagnosed with quadruple-seronegative gMG. In early 2025, three crowns fell out of her mouth, and she thought it was due to the MG. In the early spring of 2025, she had several bad reactions to Vyvgart infusions, and enrolled in a CAR-T clinical study. Then, in May of 2025, she created a FB group to crowdsource info about the clinical study. She received her genetically-modified T cells in late June. But by the end of the summer, she was reporting severe back pain again.

At the end of April 2026, she underwent a thymectomy. A few days later, her body developed a chyle (lymph and emulsified fats) leak, which impacted her lungs. She then suffered an MG exacerbation, and took some pain medicine. Her lungs became very weak, and things went downhill until she died on May 21.

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