Donavon Decker, the first person in the world to undergo gene therapy for any form of Muscular Dystrophy, died on 1st September, 2025.
Donavan and four of his sisters were all affected by Limb-Girdle muscular dystrophy (LGMD) type 2D, caused by a defect in the alpha sarcoglycan gene. In 1998, Donavon followed up on an article in the Muscular Dystrophy Association’s (MDA’s) Quest magazine that described the work of Kevin Campbell in identifying some new gene defects that could lead to LGMD. Following a biopsy in Iowa, Donavon's gene defect was identified in the alpha-sarcoglycan gene. Dr Campbell suggested that Donavon get in touch with colleagues at Ohio State where Jerry Mendell and Jim Wilson were working on an MDA-funded attempt to treat a form of muscular dystrophy with gene replacement who was devising a gene therapy trial for LGMD2D.
Donavon was the first participant to volunteer to take part in the study, despite knowing he would gain no personal benefit.On 2nd September, 1999, Donavon became the first person to receive a gene therapy for muscular dystrophy.
Following a career that spanned more than two decades working in air traffic control, in July 2023, Donavon set up his own company, Angle Therapeutics, to work on a non-viral gene therapy for LGMD.
Donavon's lifelong determination to advance the world's understanding of LGMD forged a path that others can and will follow as the LGMD community comes into its own. He will be sorely missed.
Donavon leaves behind a loving wife, Kirsten, stepson Nicholas, sisters June and Melanie, and brothers Dennis and David. He is preceded in death by his sisters Jolene, Monica and Mary.
