SMA News Today Columns

July 14, 2020July 14, 2020

Embracing Disability Pride Month

July is recognized as Disability Pride Month, as it coincides with the anniversary of the signing of the Americans with Disabilities Act of 1990. Whereas this law secures basic rights ... Read more

July 13, 2020July 13, 2020

Normal-adjacent: Welcome Back, PCAs

SMA News Today Columns

I hoped that things would “get back to normal” — whatever that means — by mid-summer. Reader, I was disappointed. But I’m used to disappointment. After all, I spent the ... Read more

July 10, 2020July 10, 2020

A Drive-in Concert Was a New and Exciting Experience

SMA News Today Columns

Because of the current state of the world, I felt safe in assuming I wouldn’t be attending any concerts this summer. I love concerts, but large, tightly packed crowds aren’t ... Read more

July 10, 2020July 10, 2020

Teaching Children About My Disability

SMA News Today Columns

It’s no question that children are curious little people, and as someone in a wheelchair, I have often witnessed their curiosity. If I were to guess, I’d assume disabilities aren’t ... Read more

July 9, 2020July 10, 2020

14 Trips Around the Sun

SMA News Today Columns

Have I ever told you that my significant other, Andy, has Becker muscular dystrophy (BMD)? Or that we met as kids at MDA Summer Camp? We did, indeed. Our hometowns ... Read more

July 8, 2020July 8, 2020

Ella Offers Her Mom Comforting Words

COVID-19 Columns, SMA News Today Columns

The Castens are a family of five: Mom (Lindsay), Dad (Michael), and three kids (Ava, Henry, and Ella). Ava is 13, Henry is 11, and Ella is 10. We have ... Read more

July 7, 2020July 7, 2020

The Beauty of Interacting with Strangers

SMA News Today Columns

“I want to know, can you show me/ I want to know about the strangers like me.” These lyrics from Phil Collins’ “Strangers Like Me” play during an iconic scene ... Read more

July 6, 2020July 6, 2020

I’m Choosing to Love the Adventure I’ve Been Given

COVID-19 Columns, SMA News Today Columns

My family has a saying: “It’s always an adventure with us.” It originated with Katelyn, an honorary member of the Albers household and my first personal care assistant (PCA). “It’s ... Read more

July 1, 2020July 2, 2020

Ella Worries About Bullying in Junior High

SMA News Today Columns

Ella just finished fourth grade and will be entering her last year at elementary school in the fall. She loved fourth grade and learned so much. She’s a bit nervous ... Read more

June 30, 2020July 1, 2020

Saying Farewell to My Beloved Canine Assistant

SMA News Today Columns

What follows is possibly the most difficult column I’ve ever written. Since 2020 has a recurring theme of being a never-ending dumpster fire for everyone, I suppose this bit of ... Read more

June 29, 2020June 30, 2020

I’m Tired of Resisting

SMA News Today Columns

One of my favorite writers, Leo Babauta, is known for his work on mindfulness and simplicity. His blog, “Zen Habits,” is one of few newsletters that I intentionally keep up ... Read more

June 26, 2020June 29, 2020

This Year’s Debut Virtual SMA Conference Was a Resounding Success

SMA News Today Columns

For many years, Cure SMA, formerly known as Families of SMA, has organized an annual conference that brings together members of the SMA community from around the globe to learn ... Read more

June 26, 2020June 29, 2020

I Hope Telemedicine Is Here to Say

SMA News Today Columns

As I’m sure most of us can attest, the world is a messy place right now. It is impossible to ignore. While I have never experienced anything as unprecedented as ... Read more

June 24, 2020June 25, 2020

Service with a Smile and a Waggly Tail

SMA News Today Columns

One month after our baby Jeffrey was diagnosed with spinal muscular atrophy, I met Cindy Schaefer on an SMA message board. Her son, BioNews Services columnist and forums director Kevin ... Read more

June 24, 2020June 24, 2020

Ella Loves Summer Play, Even with SMA

SMA News Today Columns

Ella loves the outdoors. As summer begins in our area, the warm weather follows, with shorts and short-sleeved shirts the preferred attire. But spinal muscular atrophy (SMA) presents some challenges ... Read more