Columns

June 17, 2019June 13, 2019

Rolling Like the Waves: SMAdventures in Adaptive Sailing

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

Can you recall a day that shines brightly in your mind, as you were immersed in the beauty of nature and adventure all at once? Is there a time ... Read more

June 17, 2019June 13, 2019

Reining In My Illness Anxiety Is an Ongoing Effort

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

Before I knew what illness anxiety was, I made excuses for my ever-present fear of death by the common cold. “I was supposed to die at 9 years of ... Read more

June 14, 2019June 14, 2019

Want to Pray for a Disabled Person? Ask First

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

If you live with a visible disability or illness, then there’s a good chance you’ve experienced a stranger coming up to you and asking to pray for you. As ... Read more

June 14, 2019June 12, 2019

Driving to Faraway Coffee Shops While Learning to Honor My Good Days

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

Out of context, telling people that I willingly drive for an hour to get a good cup of coffee sounds pretty ridiculous. After all, think of the countless coffee ... Read more

June 12, 2019June 10, 2019

Ella Thrives as She Celebrates Her 9th Birthday

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

Our house is filled with music and song. Ella turned 9 on Monday. In light of her joining the Young Naperville Singers, we decided to get her a karaoke ... Read more

June 11, 2019June 7, 2019

SMA Medications Are Awesome, But They’re Not Accessible

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

When I was diagnosed with spinal muscular atrophy (SMA) at 11 months old, there was no cure or treatment. Vitamins, physical therapy, and respiratory exercises were used in the ... Read more

June 10, 2019June 6, 2019

‘That Girl in the Wheelchair’: Shaping My Identity Amid Small-town Roots

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

I can’t sit still during a great classic rock tune. Despite my SMA, any muscle fibers that have remained awake will begin to shimmy and shake, and even the ... Read more

June 10, 2019June 6, 2019

Finding the Sweet Spot

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

A few weeks ago, when I was preparing for my eighth Spinraza injection, I had to indulge in an activity that many of us with SMA dread. We manage ... Read more

June 10, 2019June 6, 2019

Learning Self-love from My PCA’s Daughter

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

When I first met Elena, my patient care assistant’s daughter, she was almost 2, with chubby cheeks and golden ringlets of hair. She was shy — painfully so. It ... Read more

June 7, 2019June 5, 2019

Small Spinraza Changes Yielded Big Results

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

I believe that the smallest changes can often yield the most impactful results. Someday when you reflect on your life’s culmination of little moments and modest actions, you will ... Read more