SMA Awareness Day #7

Chomp!  Sharks:  Taking a Bite Out of SMA

(See my previous post from today about FDA approval of Risdiplam!)

This shirt was from our very first Vermont Cure SMA walk n roll in May of 2015. Our friend, Alaina, has made mosaic artwork since she was a teen. Casey picked the name Sharks for his team that he Captains. Alaina was gracious and let us use her shark mosaic for the logo. I believe our friend, MJ, came up with the tag line, “Taking a Bite Out of SMA.”  We love it!  

This was a very emotional walk. The walk itself and all the work leading up to it, too. You see, I had just decided to chair the walk and maybe had a telephone meeting when Colin passed away. There is a LOT to do pulling off an event like this especially for the first time. Of course, we had a coordinator from Cure SMA but there was a lot to do. I am not great at approaching businesses for sponsorship or donations but I made myself do it. I’m also not great at asking for help but I asked and I found some help in several local SMA families. 

I also got a great surprise!  It’s a long story but in a nutshell, some out of state friends conspired to keep it a secret that they were attending the walk and surprised the crap and some tears out of me!  Thank you again all of you. 

So there. That’s the story of my shirt!  Casey and I twinned today as he wore his, too. He didn’t even give me a grumpy look when I asked him to wear the same as me :) 

......

Today was a day. I thought it was Saturday most of the day. I forgot to get Gene and Casey up at the regular time because they usually sleep in on Saturdays. I also made my weekend “to do” list. 

Not much happened. Casey and I watched two episodes of Stranger Things. We only have about 2 episodes to go. We’ll be bummed when it’s all over. 

Aunt Chris came and they did their thing. 

Oh I got a huge load of laundry out on the line today. Perfect day for it. It’s even all folded and 2/3 put away. 

Red Sox are beating Toronto right now so I’m holding my breath they keep the lead.