SMA News Today Columns

February 26, 2021February 26, 2021

You Can Ask Me About My Disability Any Day

SMA News Today Columns

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 26, 2021

My Unsolved Symptoms Add Flair to My Rare

SMA News Today Columns

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 25, 2021

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

SMA News Today 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 25, 2021

Rare Diseases and Flying Under the Radar to Pleasantly Surprise People

COVID-19 Columns, SMA News Today Columns

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 24, 2021

Being Part of the ‘Rare’ Family Brings Unforeseen Blessings

SMA News Today Columns

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 23, 2021

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

SMA News Today Columns

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 22, 2021

How a Head Cold Saved My Life (Figuratively)

COVID-19 Columns, SMA News Today Columns

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 18, 2021

A Rare Disease Traveler Finds Her Village

SMA News Today 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 18, 2021

Searching for the Wisdom to See Challenges in New Ways

COVID-19 Columns, SMA News Today Columns

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

February 17, 2021February 17, 2021

Learning to Cherish My Fortunes in the Year of the Ox

COVID-19 Columns, SMA News Today Columns

It is my yearly Chinese New Year tradition to complain about Chinese New Year. As with all honored traditions, this one goes back to my earliest memories of the holiday: ... Read more

February 15, 2021February 15, 2021

‘Don’t Tell Me What I Can’t Do’: How ‘Lost’ Navigates Disability

SMA News Today Columns

When it comes to “Lost,” you either hate it, love it, or don’t get why people feel so strongly about it. I’m in the second camp, which is to say ... Read more

February 12, 2021February 12, 2021

10 Years Later, I’m Looking Back on My Last Hospitalization

SMA News Today Columns

It’s been 10 years since my last hospitalization. I’ve waited a long time to be able to say that, because I’ve never been able to say it before. This is ... Read more

February 12, 2021February 12, 2021

My Hopes and Fears Resurface When Others Start SMA Treatment

SMA News Today Columns

Recently, in the SMA News Today Forums, a handful of members shared that they were embarking on new treatment journeys with both Spinraza (nusinersen) and Evrysdi (risdiplam). Reading such posts ... Read more

February 11, 2021February 11, 2021

Thriving in the Winter Pines: Mother Nature, Will You Be My Valentine?

SMA News Today Columns

I could tell you this year has been difficult for me, and I’m certain you’d reply with a swift hitchhiker’s thumb and a comment to the effect of, “Yeah? Welcome ... Read more

February 10, 2021February 10, 2021

No Backup Is Needed With Angel Intervention

COVID-19 Columns, SMA News Today Columns

Oct. 6, 1997. My husband, Randy, and I snagged a last-ditch effort to save our baby Jeffrey from spinal muscular atrophy’s deadly vise: meeting with a pulmonologist who was trying ... Read more