Columns

August 9, 2019August 7, 2019

Why I Skipped My Column Last Week

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

In case you missed it, I skipped writing a column last Friday. I wouldn’t say it was by choice, even though one could argue that technically I requested the ... Read more

August 6, 2019August 7, 2019

When Getting Tattoos, Placement Is a Key Consideration

Columns, The Mermaid Chronic(les) - a Column by Kala Godin

I previously wrote a column about body modifications and how my favorite kind is tattoos. When I think about it, I’ve been in to get tattooed every year since graduating ... Read more

August 2, 2019August 1, 2019

The Kindness of Strangers in Unexpected Places

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

For our summer vacation, my family and I decided to take a trip to Ontario, Canada, to see Niagara Falls. Most of us had never been, and I had ... Read more

August 1, 2019August 7, 2019

Prepared for the Worst: How I Navigated an Outdoor Wedding

Columns, Refined By Fire - a Column by Ryan Berhar

With the annual Cure SMA Conference having recently wrapped up, the topic of travel has once again leaped to the forefront of discussion in the SMA community. The conference ... Read more

July 31, 2019August 2, 2019

Spreading SMA Awareness in August and Beyond

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

Like most families broadsided with an unexpected, rare diagnosis, my husband and I had never heard of the one attached to Jeffrey, our third baby. Spinal muscular atrophy (SMA) ... Read more

July 31, 2019July 29, 2019

As Ella’s Tastes Have Developed, We’ve Made Changes to Her Diet

Columns, Five Servings of Strength- a column by Michael Casten

Ella turned 9 years old in June. We have noticed lately that she is gaining too much weight. We’ve had Ella on the amino acid (AA) diet since she ... Read more

July 30, 2019July 25, 2019

Dating, or the Lack Thereof

Columns, The Mermaid Chronic(les) - a Column by Kala Godin

We see a lot of articles addressing SMA and dating, or dating when an individual is in a wheelchair.  I’ve had little to no experience in dating. I had ... Read more

July 30, 2019August 5, 2019

Dreading the Bed: Sleep Brings Vulnerability

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

“So, do you sleep in your wheelchair?” Believe it or not, I have been asked this question more than a few times. Granted, I don’t recall hearing it after ... Read more

July 26, 2019July 24, 2019

What Fuels Me Amid the Stress of Planning a Fundraiser

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

As I write this column, only 11 days are left before my nonprofit organization hosts its 10th annual gala for spinal muscular atrophy. Eleven. And while 11 has always ... Read more

July 24, 2019July 22, 2019

Ella Spends Time with Extended Family

Columns, Five Servings of Strength- a column by Michael Casten

Ella had a fun-filled week. Her cousin and aunt came in from Virginia to spend some summer time with the Castens. Her other two cousins, who live in Chicago, ... Read more