Strength? Or Weakness?

I have been described as mainly stubborn. I seem to have trouble giving up. Even when impractical. If I can get it done, I do. If I think I can, I try. And I think that is a strength, a good thing. According to dear olde dad, it has always been that way. AMN hasContinue reading “Strength? Or Weakness?”

A Mother’s Grief

Too often, I am afraid, we spend much of our time focusing on those afflicted with disease, without worrying so much about the impact on those around them. My mom, a lovely lady in so many ways, was stoic. She was a hard worker, who invested little in outward emotion. She was focused on objectives-Continue reading “A Mother’s Grief”

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”