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A Very Special Night Indeed!

From Kate:

It has taken me the better part of a week to post about our event last Saturday. It was simply amazing, and I had planned to talk about it the very next day but I simply got distracted. Miss Getty has a special way of telling me to stop everything I am doing and snuggle. So I abide willingly.

She is having some Mickey Mouse and daddy time right now so I have sneaked into the dining room to update about our incredible events: Hoot the Grid and SMA Art Auction.

So where do I start? It was just an awesome night all around. Stacey and I stayed at the salon while Takoa and Steph went to greet all of the Hoot the Grid Walkers. We gave out over 150 shirts for people to wear. I can only imagine how cool that looked down J Street: an entire sea of light blue.

Each walker passed out SMA Awareness bags, went on their own owl hunt, and seemed to really enjoy the time with their family and/or friends. They had little field guides leading them into different stores that participated in the Hoot the Grid. Several walkers were approached by 2nd Saturday Artwalk participants and were asked, “What the heck was going on and why are you wearing those shirts?” A conversation about SMA would commence — perfect! I also had a lot of people mention that while they were a little nervous about approaching people, most of the time the colored shirt was enough to spark up a conversation — doubly perfect.

The salon was all ready to go and I got a chance to step outside to welcome the walkers. I really had to hold back the tears because it was overwhelming to see all of these people participating for Getty and her friends, for SMA Awareness, and for a common purpose, to end this disease. It was beautiful and I was taking it all in. Lots of hugs, lots of laughing, and lots of smiles. It felt great to be among all of these great people.

Wine, appetizers, music, art, all wrapped into one. Adam and the AJF Salon were just awesome. The layout of the event worked very well. Our art was displayed all over the salon and it was such a great feeling to have people peruse each piece and learn a little more about our kids and our families.

The artwork that Stacey created that was simply called “Who is SMA?” really set the tone for the event. She touched on a very important point: SMA can affect anyone. The pictures of beautiful babies, families, siblings, and newlyweds were all an attempt to convince people that anyone can be affected. The piece also gave a face to SMA. I know I am Getty’s mommy, but our kids are gorgeous, they are such resilient fighters, and that really came through in her piece. Stacey, thank you for taking the time to create such a special piece.

The night went on, it was great to meet as many people as I could. It was great to hear that people read the blog. It was awesome to hear people say they now understand SMA and will get tested for their children, and I was equally comforted to hear lots of people willing to join in the fight against SMA with us. I had several moments when I seriously thought I was dreaming. The night couldn’t have been more perfect.

City Councilmember Kevin McCarty spoke on about the SMA Awareness proclamation presented to Mark the week prior. It was such an honor for him to be there. His support has been so important to have. I know his schedule is very busy and for him to attend was very humbling.

After he spoke, I tried my hand at it and, well, let’s just say I lost it. I started out strong and then all of this emotion came over me. I was looking out into the crowd and I guess it had just hit me that all of these people had taken the time out of their busy lives to be here with us — to share this special day with us and to help fight with us. Yep I lost it.

It made me reflect back on when Getty was first diagnosed and, I know I have said it before, but when the neurologist gave us such a grim diagnosis, all I could say was, “SMA messed with the wrong family.” At the time I had no idea what that meant or what that was going to look like, but I certainly had a glimpse of it as I looked at each face in the crowd. I knew we weren’t fighting for Getty and her friends alone; we were doing this together, and it was powerful.

Thank you to all of our family, friends, and new members of Team Getty for coming out to our event. We appreciate the support and love.

The art auction was a big success. Lots of families now have some really special art in their homes to love. All of the money raised go to the gene therapy program and we couldn’t be more excited about our efforts so far.

I made a slideshow of all the pictures that our very own Morgan Saunders took. Lots of pictures of artwork, great people, and hopefully you get the feeling of our theme, “Celebration of Life.”

Prior to the event I had lots of people ask how they can buy the art showcased at the event since they wouldn’t be able to attend. I have been working on that answer all week and the solution is Ebay! They have an online auction for non-profits.

What I will be doing is posting two pieces of art each day to be bid on. Again every single penny made will be going to the gene therapy program. Purchase of the art is tax deductible. Bidding will start on Tuesday and go for the next week or so. I will post a link to send you straight to the art auction. I truly hope you take a second to look at the art and bid on the art. They are all such special pieces.

Celebration of Life

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