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!”
Tag Archives: X-ALD
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”
Todd was the third to go
After a few trips to the hospital, mom got Todd enrolled in a hospice care program. So, the next time he got sick, he would skip the hospitalization and the stuff that goes with it. Instead he would receive extra grooming, time with a chaplain, additional nursing care, morphine and oxygen. His time in hospiceContinue reading “Todd was the third to go”
Cerebral Adrenomyeloneuropathy
This one is not such a cheerful installment. I am aware that I promised that the content of this website would be optimistic and upbeat. Nonetheless, as we all know, the potential for cerebral involvement is part of the bargain. I do not plan to dwell on it, but it is a big deal forContinue reading “Cerebral Adrenomyeloneuropathy”
His Name is Ken D: He has AMN
This one was a bit tricky for me to write. If it hits anyone the wrong way, please know that it was not intentional. I have known Ken for the past several months through ALD connect. Please watch his story. Suffice it to say, if you are afflicted with AMN and do not know him,Continue reading “His Name is Ken D: He has AMN”
Walking the Rails 