Columns

January 15, 2021January 13, 2021

Advice From a Life Coach: Resolutions, Mindsets, and Emotions

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

Last summer, I met a new friend, Amber Bosselman, at the Virtual Cure SMA Conference. Amber is a certified life coach with a bachelor’s degree in psychology. She uses ... Read more

January 15, 2021January 13, 2021

What I’ve Learned From Sharing Stories About My Life With SMA

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

January marks the eighth anniversary of when my blog came to life. I was never much of a writer prior to launching my blog. In fact, when I announced ... Read more

January 14, 2021January 12, 2021

This Is ‘Soaring With Hope’ — Welcome Aboard!

Columns, Soaring With Hope – a Column by Ari Anderson

Doesn’t it feel like we all carry a lot of baggage in life? If we could just forget about all the negatives, we could live on cloud nine. What ... Read more

January 13, 2021January 12, 2021

Another Farewell, a ‘Looth Tooth,’ and an Old-fashioned Snow Day

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

Kudos and a whew! to us all for surviving 2020. Vastly understated, last year was memorable. Overall (and thankfully), my family managed to welcome the new year intact. However, ... Read more

January 12, 2021January 8, 2021

Pursuing Personal Independence Requires Careful Planning and Thought

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

The pursuit of independence is almost always on my mind. As a disabled person, I face numerous challenges when it comes to living an independent lifestyle. From financial obstacles ... Read more

January 7, 2021January 5, 2021

A Vixen Scream: Navigating Sex and SMA

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

It cried out in the dead of night. The wild call erupted like the sensual panic of a volcano beneath placid moonlight. My partner, Andy, was helping me get ... Read more

December 31, 2020December 29, 2020

Holidays and Kidney Stones and ER Visits, Oh My!

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

I didn’t plan on spending the majority of the day after Christmas on the toilet with a sharp pain in my side, but it was a rather fitting end ... Read more

December 29, 2020December 29, 2020

This Year, I Want to Be Brave

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

Inspired by Susannah Conway, I’ve started to assign a word — yes, a single word — to the upcoming year, as a kind of landmark. Something to focus on ... Read more

December 22, 2020December 17, 2020

Rewards of Being a ‘Funcle’ With SMA

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

Christmas Eve marks four years since I became an uncle, or as I like to call myself, a “funcle.” I let my sister and brother-in-law attend to all of ... Read more

December 21, 2020December 16, 2020

I Can’t Get Evrysdi Yet, Thanks to a Broken Healthcare System

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

I may have thrown a fit about genetic testing, but at the end of the day, it was easier than most things. The genetic counselor sent me the test ... Read more