With the days falling shorter and the leaves changing color, I can feel the last bit of summer sunshine slowly fading into autumn. It seems like yesterday I was packing my bags for Washington DC to kick off my summer, and now here I am, replaying these last few months over and over in my mind, wishing I could relive each moment and savor them for just a little while longer. There’s always going to be that one summer that’s stamped our lives in some way, the kind of summer that changes us for the better. This summer has done just that for me.

The summer began with the launch of my Dare to be Remarkable documentary project. What I thought was just the beginning of my next endeavor in generating SMA awareness turned out to be something greater. It was the beginning of the most remarkable journey I have ever embarked on to date. In June, I traveled to Washington, D.C. to advocate for SMA and along the way met some incredible people who have been affected by this disease. These people and their heartbreakingly touching stories taught me the true meaning of fearlessness and ignited a spark in my bones to continue to grow and thrive. I came home from that trip with a newfound perspective of life and the gusto to want to support and help SMA families across the globe. I felt it more than ever.

Summer of 2014 was filled with great friends, old and new, beach trips, and so much more. With the help of an amazing committee and 450 incredible guests, I donated $28,000 to Cure SMA from our 5th annual fundraiser. This led me to officially surpass my goal of wanting to raise $100,000 for SMA. I toured the Alex and Ani headquarters here in Rhode Island and was given the opportunity to be a guest blogger for them during SMA awareness month. Alex and Ani is primarily focused on spreading love and positive energy through their products, and actually seeing that firsthand really inspired me to try and live by the same beliefs.

To top off a perfect summer, I spent a Friday night with the New England Patriots during a preseason game at Gillette Stadium. I cannot begin to express the kindness and warmth that radiates from the entire Patriots organization, and I will forever be indebted to Stacey James, Robert Kraft, and all the other members of the organization for giving me and my family the opportunity of a lifetime. I never imagined, after all these years of sitting on my couch watching from in front of a TV screen, that one day I’d be on the sidelines spending time with Robert Kraft, Andre Tippett, and even Vince Wilfork (my new puppy’s namesake). That night was more than I deserved, and I learned that the Patriots are just as remarkable off the field as they are on the field.

As most things in life usually go, with great joy comes great sorrow. Losing my service dog, Fred, at the very end of summer was (and still is) one of the most difficult experiences I have ever faced. Moving forward without him by my side has been heart wrenching, to say the least, but, with every ending we try and look forward to new beginnings. The goodness exemplified by the people I met this summer encourages and drives me to continue to work towards being the best version of myself as I can possibly be. There are still so many opportunities and plans on my horizon, and I cannot wait to share my journey with each and every one of you. Here’s to a new season and embracing the changes with every leaf that turns to gold.


Author: Alyssa

Chronicling my journey while teaching the world that I have SMA, but it will NEVER have me. Life's what you make it, dare to make it a remarkable one✨


  1. Love, love, love your tenacity on how you live life!( hope I said that correctly). You never fail to amaze me! Will always be here for you! Love you, MFA

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