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Welcome to my little corner of the internet. I’m Alyssa, and I’m here to share my personal story with SMA with you.

In January 2013, I began a blog on a whim. Yes, that’s right- I had no experience in blogging, and truthfully, didn’t exactly LOVE to write (that quickly changed!). However, I was still compelled to share my story in some way, and blogging seemed like the best avenue.

I decided to do a bit of research on my topic before diving into the blogosphere, and a quick Google search on SMA led to a bunch of depressing (but, unfortunately, true) medical facts.

After scoping the internet, I realized I wanted to find something more than just the prognosis of this disease.

I wanted firsthand stories- the good, the bad, and the ugly- of those affected by SMA because living with this disease is so much more than a page in an online medical journal can tell us. So, that’s when my blog came to life.

From there, I decided to branch out and take my efforts even further in hopes of bringing even more awareness to this disease. I established a nonprofit organization called Working On Walking in 2014 and later filmed a documentary called Dare to be Remarkable- which will be released later this year! My efforts have always been done in love and in faith knowing that we can conquer this disease.

So, what will you find here?

Here, you’ll see I write about my life’s little stories. Real, personal stories about living with SMA and how I’m learning (or have learned) to rise above the everyday challenges I face. Over the years, I’ve come to realize that life isn’t about focusing on what you don’t have. It’s about working with what you do have and daring to live remarkably despite those challenges. It’s about finding love and strength and happiness in the most ordinary things. It’s about YOU and how you choose to live YOUR life.

Although I have SMA, SMA doesn’t have me. This life is what I make of it, and I hope to make it a remarkable one. Are you with me?


Thank you for checking in to see what my blog is all about, and I hope you’ll poke around for a bit and continue to follow me on my journey. I love hearing from each and every one of you, so please reach out to say hello. You can also reach me at alyssa@workingonwalking.org!