The Good, the Bad, the Ugly, and the Beautiful
Everyone is shaped by their circumstances, but SMA shapes you (literally) in a more extreme way. For most of my life, I did not understand the difference between my personal preferences and the person…
Refined By Fire — Ryan Berhar
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.
Featured Post
I Have Complicated Feelings About Rare Disease Day
With Rare Disease Day coming up on Feb. 29, one question in particular has been circling the SMA community: “What makes you rare?” Anyone affected by a rare disease is entitled to their…
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My Spinraza Journey
Spinraza. This word elicits a different emotion for each person. Much like SMA itself, everyone’s experience with this medical treatment is different. For some, it has been life-changing in a good way; for others, in…
Refined by Fire
At 10 months old, I was diagnosed with spinal muscular atrophy (SMA) type II, a recessive genetic neuromuscular disease. It increasingly robs me of strength and affects my spinal cord’s motor nerve cells. As…
