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.

Advice from My Best Friend

Last in a series. Read parts one, two, and three. To wrap up this series of conversations with people close to me, I interviewed my best friend, Sam DeVos. Sam is one of the most positive, optimistic people I’ve ever met,…

A Perspective from an SMA Father

Third in a series. Read parts one and two. In the following interview, I’ll explore how SMA impacts the way people perceive me, as well as share valuable advice for families with a loved one newly diagnosed with SMA. I interview my…

My Aunt’s Advice for Optimal Self-care

Second in a series. Read part one.  This week, I sought advice from my aunt, Heidi McLaughlin, because she is a thoughtful, wise person. Like me, she is a writer. RB: If I didn’t have SMA and you could only give…

Free Advice Worth Paying For

I go to my family and friends for advice before anyone else. They’ve always given me tremendous input, but how is that affected by SMA, if at all? In the following interview, the first in a series, I’ll explore how SMA impacts the way people perceive…

Thinking Long-term When Planning

As a kid with SMA, I had numerous ongoing hardships that caused me a great deal of stress. Most 7-year-olds don’t have to deal with the prospect of a spinal fusion surgery or with the idea that pneumonia soon could strike them again…

5 Things I’m Most Thankful For

I try to be thankful every day, but at Thanksgiving, I try extra hard. A couple years ago, my grandma had our entire family write things we were thankful for on plastic pumpkins. While my cousins wrote what seemed like a paragraph on theirs,…

Getting on the Wrong Train in Portland

A couple times now I’ve touched on my surgery that didn’t happen at a hospital in Portland, Oregon. It’s an experience that was highly relevant to life with SMA and the therapy Spinraza, so it tends to jump to the forefront of…

Fall Is My Favorite Season of the Year

For most of my life, summer was my favorite season. I’ve never been a fan of school or frigid temperatures, both of which are absent during the summer. Once I graduated from high school, however, summer no longer held first place. Over the last…