“Race for Mase” on Mason’s 10th birthday!


by Sara

Mason hit a milestone birthday – he is 10 years old!  One of Mason’s favorite things in the whole world is running with us; we’ve logged hundreds of miles with him over these past 10 years and have competed in several races — and medaled!  We thought, what better way to celebrate Mason and his special birthday than a Run/Walk that benefited Grace Science Foundation.

People always ask us, “What should I get Mason for his birthday?”  It’s a question that I honestly dread every year because aside from my typical answer of, “Clothes or something with Mickey Mouse on it,” I struggle with knowing what Mason wants and I don’t like to waste.  We’ve bought too many presents for the sake of making sure he had a birthday gift that he ended up not liking or not using, and it’s incredibly disappointing.  This year was special, and we wanted it to be different – we wanted to make a difference on his birthday instead of worrying about what to buy him, so, we decided to organize a fun run/walk in his honor that would benefit the Grace Science Foundation, which is dedicated to finding a cure for his rare genetic disorder, NGLY1 deficiency. Mason recently flew out to California to participate in a Natural History Study. His participation in the study allows scientists and researchers to have a better understanding of the disorder and provides them with information that we are hopeful will lead to a cure. These tests also help his local doctors and us provide the best care possible for him.

Our goal is to make this an annual event; however, this year, we decided to start small and invited family and friends to run or walk with us at the Cape Henlopen State Park in Lewes, DE.  Even with our completely last minute and unorganized efforts, to date we have been able to raise over $650!  What’s even more heartwarming is, after the event, we shared our story and people who weren’t even at the event donated in honor of Mason!!  We are surrounded by some pretty incredible people who have supported Mason and our family through these last 10 years.  We are blessed to be part of such an amazing community and proud that so many people are helping us fight to find a cure!  Thank you to everyone who has helped us along the way, through all the ups and downs.  We wouldn’t have been able to do it without you!

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