Refined By Fire – a Column by Ryan Berhar

Rare Disease Day

Ryan is a simple man from Bend, Oregon. While he aspires to one day become a sit-down comedian, he has turned most of his attention to writing. He loves sharing his life experiences with people and bringing awareness to his disease. His two favorite things are sports and coffee.

My Experience with the JACO Robotic Arm

Throughout my life, I have required assistance with the most basic tasks. Things like scratching my head, getting myself a drink, or picking something up off the floor are just a few items on a never-ending list of impossibilities. Fortunately, there is now…

Social Media Is a Double-edged Sword

The internet is a valuable tool for someone like me, especially for the purpose of social platforming. I can’t do much socializing in real life. Whether the environment is too loud for me to be heard, the venue is inaccessible, or the activity is something…

Failing to Learn from Others’ Mistakes

As the famous proverb goes, “Experience is the best teacher.” While that makes sense, I prefer to say, “Other people’s experiences are the best teachers.” Why go through the pain of learning from my own mistakes when I could learn from yours?…

An Update on My Spinraza Journey

I haven’t updated my Spinraza journey for a while because, well, nothing has happened. But we are getting down to the wire. Something is about to happen — or not happen — by the time this column is published.  Since there…