Alyssa's Story

alyssa_smilingHi there, Alyssa here! When I was 5 months old, I was diagnosed with this neuromuscular disease. To put it simply, SMA is a progressive illness that affects all voluntary muscles such as walking, swallowing, breathing, etc. It is the number one genetic killer in infants under the age of 2 and more commonly known as the sister disease to ALS. At the time of my diagnosis (April 1991), very little was known about SMA, and the doctors told my parents I would succumb to this disease around the age of two. There was nothing they could do to prevent the seemingly inevitable fate I received that day; so, with heavy hearts, my parents showered me with all the love they could possibly give before it was too late.

Although the odds were really stacked against me, as fate would have it, I have lived well past the age of two. Of course, that being said, my life has certainly been challenging at times. Living with SMA means living with daily obstacles and struggles and a constant fear of what could happen from day to day. But, just like any other difficulties we experience, how we choose to face them is what makes all the difference- it’s what makes life worth living. So, with that, I decided to choose happiness, love, and fulfilling life.


Today, I’m 26 years old and a proud graduate of Bryant University where I'm putting my Marketing degree to good use. (Hint hint: this organization!) I live in a small town in the smallest state with my incredible parents and pups, Vince and Wish (my service dog). I also have the most extraordinary brother, Adam, who’s now married to Krystina and living two miles down the road. I tried my very best to get rid of him, but I guess he just likes me too much, so he'll never leave this town!

On any given day, you will find me working for WOW, going on daily adventures with Wish, shamelessly singing along to Celine Dion, and spending time with loved ones. I am also in the process of releasing a full-length documentary, appropriately titled Dare to be Remarkable, which you can find in the navigation menu above. It’s been three years in the making, and I cannot begin to describe how excited I am to finally show you guys just what we’ve been working on in the upcoming months!

From the bottom of my heart, I want to thank you for your continued kindness and generosity over the years. It is through your outpouring of love and support that I am able to do what I do. And, for that, every day I strive to do my best to better this organization, and most importantly, better the world of SMA.