Columns

March 1, 2021February 25, 2021

My SMA Friends Remind Me That It’s OK to Rest

Columns, The Wolf Finally Frees Itself - a column by Brianna Albers

You already know that for the longest time, I didn’t want friends with SMA. I was young and desperate to be seen as “cool” (whatever that means), but more than ... Read more

February 26, 2021February 24, 2021

You Can Ask Me About My Disability Any Day

Columns, From Where I Sit - a Column by Halsey Blocher

As Rare Disease Day approaches on Feb. 28, many in the disability community are seizing the opportunity to share about their diseases and the many aspects of being rare. Having ... Read more

February 26, 2021February 24, 2021

My Unsolved Symptoms Add Flair to My Rare

Columns, Life, One Cup at a Time - a Column by Alyssa Silva

These days, I’ve been soaking up all the true crime content I can set my eyes and ears on. Documentaries, podcasts, “Dateline” episodes that I now look forward to every ... Read more

February 25, 2021February 22, 2021

Rose Hips and Vintage Vanities: Staring Into My Reflection With SMA

A Wildflower in the Wheelderness - a Column by Katie Napiwocki, Columns

I’ve done it yet again.  I’ve fallen in love at first sight. (Would you expect anything less of an Aquarius?) I’ve been searching for a new bedroom vanity that better ... Read more

February 25, 2021February 24, 2021

Rare Diseases and Flying Under the Radar to Pleasantly Surprise People

Columns, Soaring With Hope – a Column by Ari Anderson

To those feeling too rare on Rare Disease Day (Feb. 28) let the following empower you. The saying “hidden in plain sight” can take on a new meaning when you ... Read more

February 24, 2021February 22, 2021

Being Part of the ‘Rare’ Family Brings Unforeseen Blessings

Columns, We're Not in Kansas Anymore - a Column by Helen Baldwin

As my husband, Randy, and I slipped into our mid 40s, God plopped a little surprise into our middle-aged laps: a pregnancy. Totally unprepared in all ways for a baby, ... Read more

February 23, 2021February 19, 2021

This Rare Disease Day, I’m Grateful for My Friends

Columns, Embracing My Inner Alien - a column by Kevin Schaefer

You know it’s a unique relationship when one friend helps the other use the bathroom. This is the scenario I found myself in a couple weeks ago when my longtime ... Read more

February 22, 2021February 18, 2021

How a Head Cold Saved My Life (Figuratively)

Columns, The Wolf Finally Frees Itself - a column by Brianna Albers

We all know that I hate getting up early. Just like I hate adjusting to a new wheelchair — I’ll do it if I have to, but that doesn’t mean ... Read more

February 18, 2021February 16, 2021

A Rare Disease Traveler Finds Her Village

A Wildflower in the Wheelderness - a Column by Katie Napiwocki, Columns

I was once a rare traveler wandering the countryside. On my shoulders, I carried a basket of artifacts and relics. Each piece correlated to moments in my life when I’ve ... Read more

February 18, 2021February 17, 2021

Searching for the Wisdom to See Challenges in New Ways

Columns, Soaring With Hope – a Column by Ari Anderson

Wouldn’t it be wonderful if we could easily put into practice the lessons we learned growing up? We were taught to think about the effects of our decisions, but sometimes ... Read more