What happened? -- Mother of young adult w. Duchenne, stood up at Parent Project Muscular Dysytrophy (PPMD) conference, criticized Sarepta $SRPT exec on stage during Q&A gene therapy session. Elevidys is the "Betamax of gene therapy," she said, faults Sarepta for withholding key data. -- Later, Sarepta demands PPMD edit the video to remove the mother's comments. PPMD agrees. The mother's comments were stricken. -- PPMD posts the censored video on its web site, then deletes it altogether after the editing incident leaks out. -- The incident raises questions about the financial ties between Sarepta and PPMD, and whether the drugmaker uses its money to influence, or even muzzle, debate over its Duchenne medicines. It has also bolstered concerns voiced by some parents of young adults with Duchenne that Sarepta is more focused on profiting from its gene therapy, called Elevidys, than providing them with information necessary to prove its efficacy and safety, despite the blessing of the Food and Drug Administration. -- I spoke to the woman whose comments against Sarepta were removed from the video. I also spoke to two other mothers who have older sons with Duchenne -- all critical of Sarepta for promoting Elevidys for older boys/young adults without adequate evidence. statnews.com/2024/07/29/sare…