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Although the study was halted, I still needed to come in for my final study appointment. Compared to my previous visits, my mood was not great. Still, I tried to be optimistic. I arrived armed with questions: “why was the study stopped early”, and with a bit of desperation, “were they able to salvage anyContinue reading ““So, there you have it, drink Lorenzo’s Oil and grow myelin!””
The plan was a 4-year study, but 3.5 years in, I got a letter ordering me to stop taking the oil immediately, no explanation. I later learned that the IRB shut it down because enrolment was slow, inadequate patient retention and a safety issue. Turns out the safety thing was in a placebo patient, butContinue reading “Derailed”
For those of us seeking up to date information on AMN and all of the other X-ALD maladies, I encourage you to register and attend this year’s ALD Connect Annual Meeting. There is no charge to register (as long as you are not a company) and it is virtual, so there truly are no goodContinue reading “ALD Connect Annual Meeting is Upon Us!”
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