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…
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 opinion. Likewise, everyone is uniquely…
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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.
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…
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…
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.
I’m Struggling to Find Contentment with Reliance Upon a Ceiling Lift
For a couple of years now, I’ve been working to achieve a positive wave of change in my life. My ultimate goals are to provide for myself financially and move into my own home.
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…
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…
Tips to Stay Warm When Temperatures Drop
For most of the year, I’m chilled to the bone. While most people are comfortable at 60 degrees Fahrenheit, exposure to such a temperature for half an hour results in loss of hand…
Deciding to Hold Off on Spinraza, for Now
In the past two years, I’ve held seemingly every possible position on Spinraza (nusinersen). I went from elation in knowing that a treatment for SMA existed to being so fed up with the…
Lost? Find a Mentor
After I graduated high school, I had zero ideas of what I would do from there. The paths that young adults typically take were not workable for me. I couldn’t simply…
My Labor Day Weekend Was Action-packed and Challenging
In my last column, “Meticulous or Ridiculous?”, I mentioned that I was traveling to Eugene for the Oregon football home opener. It’s a trip I’m used to because I’ve made it seven…
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