Plenty to Do While Awaiting Spinraza

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by Kevin Schaefer |

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life, work and possibilities

Kevin Embracing my inner alien
November is a pretty jam-packed month for me. I’m working on a book project for the annual NaNoWriMo contest, juggling two separate podcasts, getting ready for the North Carolina Comicon. And on top of all that, I start my Spinraza injections a week from the time of writing this. In short, I’ll be ready to take a breather and stuff myself with turkey when Thanksgiving arrives.

My Spinraza journey so far has been an interesting one. Back when the treatment was FDA-approved last December, I was happy to hear the news and to see how it would help families in the SMA community; but I wasn’t quite sure if it was the best option for me, or if I would even get a chance to receive it.

Then in April, when I was a panelist at the Patient-Focused Drug Development conference in Maryland, I was happy to share my story and advocate for other SMA individuals and families, but I still didn’t expect to go through the treatment process myself. I had already been denied by my insurance provider once, and while the benefits were good, I just wasn’t desperate to attain the drug. While I’m happy to raise awareness about SMA and be a spokesperson for research, I place a higher priority on making the world more accepting of people with disabilities, and encouraging my SMA brothers and sisters to focus more on what they can do, rather than what they can’t.

By the time I was approved for Spinraza in July, I still had doubts about whether or not it was the best option for me. Yes, stopping the progression of my SMA would be huge, but I knew it would come at a cost. Beyond the fact that the drug is administered via a spinal injection and that my having had a spinal fusion surgery years ago could lead to complications, there’s also the sheer time commitment.

Four loading doses in the first two months and an injection every four months after that is pretty daunting. I already go in for water therapy every week, see my pulmonologist every four months, my regular doctor once a year, and visit the MDA clinic at least annually. All that isn’t even counting my dentist, eye doctor and other specialists whom I can’t even keep track of. I had to wrestle with myself to determine if I was willing to add yet another series of appointments to my calendar.

I say all of this not to undermine the importance of Spinraza and other treatments currently in clinical trials. These drugs are vital in the SMA community and have already saved lives, and I’m excited to see what kind of impact they will continue to have. All I’m saying is that it’s a big decision for anyone to go through the treatment process, and I know it took me multiple conversations with friends and family and some heavy thinking to say yes to it. Ultimately, I know I would benefit greatly from my SMA not progressing any further than it already has, and I’m willing to face the time commitment and the uncertainty that comes with the injections in order to make that happen.

Nevertheless, I’m not letting the fact that I have 13 appointments between now and December slow me down. This encompasses everything from water therapy, to Spinraza injections, to doctor visits, but I have too many other things going on to put my life on hold. After my first injection, the NC Comicon kicks off the next day, where I’ll be moderating two panels. Then in addition to my work here and hosting the SMA News Today podcast, I co-host an entertainment podcast (all of our content is available at with my friends Rich and Jordan, and that will definitely continue. On top of all that I’m working on a book project for NaNoWriMo, because why not?

Some people say I’m crazy and wonder how I manage everything, but there’s really no magic formula to it. I have goals and desires just like any human, and I hate the idea of sitting at home and wasting away just because I have different challenges than the average person. SMA has no doubt made things difficult for me, but it’s also given me a unique perspective on life and the world around me.

Whatever happens next Thursday when I go in for the first loading dose, I want people to understand that it won’t be as life-changing for me as everyone wants it to be. I’ve lived an amazing life up until this point, and I’m going to continue living it after my neurologist sticks that needle in my spine. I’m hoping for the best, but regardless of what happens or what effect it will have, my life will go on and The Last Jedi will still hit theaters this December. What more could I want?


Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.


Balraj A.P avatar

Balraj A.P

This is a great achievement. People like my son stand a chance to have a trial of this new drug. Let's hope the drug reaches the majority of the humanity at the earliest, for those who are suffering from SMA.

Poonam Dutt avatar

Poonam Dutt

The cost needs to be reduced to reach a wider section


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