bradleygillespie

Bitty & Beau’s

This is quite fabulous. Please read and share the inspiration: http://www.bittyandbeauscoffee.com Amy & Ben Wright are the proud parents of four children — Lillie, Emma Grace, Beau and Bitty. Lillie was born with autism, and Bitty & Beau were born with Down syndrome. With over 80% of people with intellectual and developmental disabilities unemployed nationwide,Continue reading “Bitty & Beau’s”

Getting to Know Mr. Augusto

I guess I never knew quite what it cost. There were a few extras: wire fees, shipping charges, U.S. import duties and the like. Besides, I bought the stuff in Euros, and I always get confused by exchange rates. It seems that in December, 2009, it came to around $175 a bottle, which was enoughContinue reading “Getting to Know Mr. Augusto”

Fire in the hole!

Untangling the shipping mess was going to wait. I had 17 bottles, and was on the program. I figured that my dose ought to be 50 mL per day. I vividly remember that first day. The whole family gathered around the kitchen table, almost like a ceremony. They watched as I carefully measured out theContinue reading “Fire in the hole!”

I am told that getting weed is pretty straight forward. Lorenzo’s Oil was a bit trickier.

I sent out bunches of e-mails to suppliers. Mostly, I never heard back, and when I did, there was always one roadblock or the other: the Oil was available only by prescription, while sometimes, it could be purchased over the counter. Then it got complicated. The darn thing was, even if the Oil could beContinue reading “I am told that getting weed is pretty straight forward. Lorenzo’s Oil was a bit trickier.”

“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”