Something to Consider

I love to enter road races in my wheelchair. It is part of what I do, to feel normal. I guess I have a bit of work ahead of me before I need to deal with the problems described in this article- I am consistently slow. https://fivethirtyeight.com/features/why-wheelchair-racers-outpace-olympic-distance-runners-but-not-sprinters/ I have a racing chair that some dudeContinue reading “Something to Consider”

Partnering to fight AMN together

First let me say, on behalf of everyone at SwanBio Therapeutics, how much we admire and respect the platform Brad has created here with his blog. The voices of people dealing with AMN are the ones that rise to the top when we make decisions. For readers who don’t know us, SwanBio is targeting diseasesContinue reading “Partnering to fight AMN together”

Genotypes, Phenotype, Whatotypes?

I expect every man with AMN knows full well how he got to where he is. We all know that while dad did his part proper on the Y, over on the X side, well, politely, mom shared a gimpy chromosome. Thus, the term, X-linked, as in the umbrella term, X-ALD. This, boys, is ourContinue reading “Genotypes, Phenotype, Whatotypes?”

Mi Historia con la AMN

Please excuse my translation. Giancarlo wanted it posted in English, also. I have tried– Brad It all started 5 years ago. I was 26 years old, I worked for a clinic and played sports, especially swimming. I lived a normal life like any child and young person. I was very outgoing and had many dreamsContinue reading “Mi Historia con la AMN”

Mi Historia con la AMN

Todo empezó hace 5 años tenia 26 años, trabajaba para una clínica y practicaba deporte Natación especialmente, viví una vida normal como cualquier niño y joven muy extrovertido y con muchos sueños por realizar empece a presentar síntomas en mis piernas a fatigarme cuando caminaba mucho empezaba a caminar mal y aveces me caía, esoContinue reading “Mi Historia con la AMN”

Very Happy to see New Views

Starting this enterprise does not come easy for me. I have carefully avoided the whole social media thing, and while I have occasionally thought about blogging, I had no idea how to go about that. I am not well equipped. It is slow going, but I am seeing progress as I pick up a bitContinue reading “Very Happy to see New Views”

Coming Up: Early Leanings of a Crippled Man

The foundations were poured and my underpinnings securely in place. With passing of time, that gimpy strip of DNA began to stake its claim, and make a name for itself….. With growth, comes progress. Such developments may come along in many ways. The mastery of a talent or skill, can be a beautiful thing. OrContinue reading “Coming Up: Early Leanings of a Crippled Man”

2013: Loose Ends

That was the end of the notes that I kept documenting my go around with AMN. I wrote the following, today, 2 August 2021, based on what I can remember. Looking at it all in retrospect, it seems like a continuous, drawn-out rollercoaster ride, with high highs, low lows, loop de loops and hairpin turns,Continue reading “2013: Loose Ends”

Am I done? Am I Resting? Something Else?

A strange thing happened to me yesterday. When I was a young man, freshly diagnosed, I was full of vinegar, keen to learn the science and seek out potential cures. Not snake oil, oh no. There plenty of these salespeople to be had. This was not it. I wanted science-based answers. Sadly, there really wasContinue reading “Am I done? Am I Resting? Something Else?”