This guest blog was written by a woman who is very near and dear to my heart. Her name is Mary Smith, and I’ve been fortunate enough to have her in my life for the last twenty years. She is the Vice President of my nonprofit organization, and she is also the reason why we have our annual fundraisers. I am so excited to introduce you to this incredible woman!

Alyssa has been such an important person in my life as well as my family’s for the last twenty years, and I was so honored when she asked me to be her guest blogger.  I don’t think I have words that can express the love and admiration I have in my heart for Alyssa. However, I do know that she has given me the determination to continue fundraising until the cure for Spinal Muscular Atrophy is finally made available to all children that are afflicted with this disease.

Six years ago, fundraising was something that I knew nothing about.  My husband and son had played in many golf tournament fundraisers, and I was always curious as to how much work it was. My husband would always say, “A LOT!”  (Boy was he right.) I had known for years that I wanted to do something to help Alyssa continue her fundraising efforts, but I wasn’t sure what to do. Finally, one June night as I was walking to the clubhouse at Louisquissett Golf Course with my husband, I told him I thought we should have a golf tournament for Alyssa, but I would need his help.  We spoke with the Pro and, before I knew it, we were on our way to our first event. Alyssa, her mom Dori, and her father Phil were of course on board too. I don’t think any of us knew what we were doing, so we crossed our fingers and prayed that everything would go well. The Pro was such a valuable resource and helped us with every detail for which I will always be grateful. I am also blessed with parents who were also willing to help in anyway that they could and still do. Most importantly, we will always be grateful for the original one hundred people who attended the golf, dinner and auction. In fact, many of them are still with us, but, boy, have we come a long way since then!

So, here we are in year six of the Working on Walking Golf Tournament and Dinner.  I never imagined that this one little idea was going to blossom into a yearly event.  Last year’s attendance was 450 extremely generous and wonderful people, and now, our goal for this year is 550 which we know will be reached. None of this growth and complete success of the event could be possible without the WOW committee. This group of volunteers has dedicated themselves to Alyssa, WOW and of course the cure of SMA. Words cannot express the appreciation I have for each and every one of them.

Although the event has continued to grow, one thing has not changed since the very first tournament. It’s that magical feeling that is shared throughout the room. The love, friendship and support that resonate among those in attendance is incredible.  After every event, many of us will meet people who attended and they will thank us for such an inspiring event. I hope that we never lose the “magic”. Although we are a fundraiser, I believe this event has turned into so much more. It is just a small chapter in a story of a young girl who grew into a determined woman who “Dares to be Remarkable” every day of her life and touches the heart of everyone she meets.  I am so grateful for the little girl who rolled her way into my life many years ago and has taught me the true meaning of courage, determination and strength.  She is my inspiration to continuing fundraising for Spinal Muscular Atrophy’s cure.

For more information on this event, please visit our website here!


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. Well said Mary! You are right, this year will be bigger ! Glad you and Fred started this six years ago and happy to be able to be part of it now! You are special people! Xo

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