“So, there you have it, drink Lorenzo’s Oil and grow myelin!”

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!””

Derailed

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”

ALD Connect Annual Meeting is Upon Us!

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!”

The Trial Begins!

In April, 2005, I was the fourth to be selected for the Lorenzo’s Oil AMN study at the Kennedy-Krieger Institute. I eagerly traveled to Baltimore and underwent all of the pre-study poking and prodding. My blood was drawn, I got an MRI to assess the extent of demyelination in my neck, the whole motion analysisContinue reading “The Trial Begins!”

Great Work Continues at SwanBio!

I was thrilled to read today about the mouse data that they announced today: human ABCD1 shows dose-responsive expression and activity To my untrained eye, this is fabulous news, and so much better than the plethora of ways that we have seen to lower VLCFA. To actually move on our mutated gene sure looks greatContinue reading “Great Work Continues at SwanBio!”

Lorenzo’s Oil

Lorenzo’s Oil, a 4:1 mix of oleic erucic acid is extracted from rapeseed and olive oil. This stuff normalized the accumulation of VLCFA in the brain. It seemed like a straight forward enough solution; it should counter the disease and slow its progression. The Oil had been studied for decades. In the beginning, they gaveContinue reading “Lorenzo’s Oil”

Curing AMN: A Tall Order

I learned that there had been a transgenic X-ALD mouse model for many years, and I kept hearing about the grand gene therapy trials that were right around the corner. Still, things were not happening as I would have liked. At the time (mid-to-late 90s), efforts were limited to re-purposing old medications; not exciting. Still,Continue reading “Curing AMN: A Tall Order”

Brad Gillespie: AMN Peer Mentor

I am pleased to be selected by ALDConnect as a Peer Mentor. It is my hope that I am able to help AMN-afflicted men better understand their disease and the scary thoughts that many of us feel as we come to terms with our diagnosis. Many thanks to the folks at ALDConnect for the opportunityContinue reading “Brad Gillespie: AMN Peer Mentor”

Back to Business: What to do with a Recent AMN Diagnosis?

Please rewind to 1996, the early, foggy days. So that was what cerebral involvement was all about. There was no way that I could have imagined how horrible it could be. Nonetheless, at least for the time being, my MRI looked good: I did not have to worry about this business, and that was aContinue reading “Back to Business: What to do with a Recent AMN Diagnosis?”

Coming to Know Todd

While dying is what we are trained to fear, it turned out that bearing witness to the passage from living to dead was not as difficult for me as I had expected. Somewhere in the process, I became detached from the anticipated dread, and engaged in a pleasantly unexpected subject. To understand this development requiresContinue reading “Coming to Know Todd”