Embracing My Inner Alien – a column by Kevin Schaefer

June 25, 2019June 20, 2019

I’m Learning to Recognize My Own Limitations

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

Since I started receiving my Spinraza (nusinersen) treatments in November 2017, my energy level has skyrocketed. Often, I don’t even realize just how good I feel now. Then I ... Read more

June 18, 2019June 14, 2019

My Bobblehead Days Are Behind Me

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

One of the ways that spinal muscular atrophy (SMA) has affected me physically is my posture. I’ve always had difficulty sitting up straight, and to this day I have ... 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 4, 2019May 31, 2019

Research Advancements and Adults with SMA

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

On May 24, Zolgensma (previously known as AVXS-101) became the second FDA-approved treatment for SMA. This gene therapy from pharmaceutical companies AveXis and Novartis is a major milestone for ... Read more

May 28, 2019May 23, 2019

Staying Home Alone When You Have SMA Takes Planning

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

Those of us who have SMA live surrounded by other people. We rely on others to bathe us, get us dressed, help us eat, move our hands, drive us to ... Read more

May 21, 2019May 17, 2019

No Accessible Room at the Inn

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

I now know what it was like for Mary and Joseph when they were trying to find a room in Bethlehem. While we didn’t have to resort to sleeping ... Read more

May 14, 2019May 17, 2019

Making Connections Through SMA Enriches My Life

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

A couple of months ago, a woman stopped me in the hallway of the clinic I go to for physical therapy. She overheard me talking with one of my ... Read more

May 7, 2019May 3, 2019

Everyone into the Pool: How I Learned to Love Physical Therapy

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

If someone had told me a few years ago that I would love going to physical therapy every week, I would have laughed. Let’s just say that the idea ... Read more

April 30, 2019April 26, 2019

My Care Network Is Vast, and That’s the Way I Like It

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

They say it takes a village to raise a child. If that’s true, then it takes an army to care for someone who has SMA. Though most of us ... Read more

April 23, 2019April 22, 2019

Making Big Occasions Inclusive

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

When it came time to plan for my brother’s bachelor weekend festivities, I was adamant about participating as much as possible. Events like this aren’t always inclusive for people ... Read more

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