Getty Owl Foundation

Going, Going, Gone! for a Great Cause

From Kate:

So tomorrow starts what I truly hope is a big success. Our SMA Art Online Auction will begin tomorrow morning. I just about killed myself trying to figure out all the logistics for selling online, but I got it and now all I have to say is, “Let’s Roll!”

We will be selling two pieces of art a day. They will be listed on eBay and you will have a chance to bid on each of the pieces.

They are all very special, in that they are all created by either a child with SMA or their loving parent. Each piece I know would be a welcome addition to anyone’s child’s room, nursery, livingroom, etc.

100% of the proceeds will be going to the Gene Therapy Program at Nationwide Children’s Hospital in Columbus, Ohio.

I will be posting all the new listings on the blog. I hope you can stop by and check out the art.

Each piece will start at a bid of $10 and go up from there.

Okay let me show which one will be up for auction first. It is so cute and so creative. Thank you Miss Nora for parting with your masterpiece. 🙂 We named it “Abstract Minnie”

Check it out tomorrow, bid and it can be yours.

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

Sacramento Most Valuable Blogger – CBS13 – PLEASE VOTE DAILY!

Getty Owl is honored to be nominated for Sacramento’s Most Valuable Blogger in an online contest hosted by CBS13.

Please vote DAILY through September 9 and help raise SMA Awareness!

You can access the voting by clicking the image, then click again to cast your vote.

Spread the word!

Thank you!

Visual Aides Are Good Too!

From Kate:

Since August has begun, I have been trying to find all kinds of ways to get awareness into the general community. I can only imagine to the outside world, SMA can look scary and the science behind can seem very well, scientific.

SMA is scary and it is a devastating disease. All it does is take. As I write this, SMA is currently robbing my sweet daughter of her muscles and all I can do as her mother is to give her all the love and all the opportunity to thrive in a world that doesn’t modify much for the disabled. She is currently watching A Bugs Life and loves it by the way. She always giggles when Hopper gets fed to the baby birds. I always do a double take and look at her and wonder, does she know why she is laughing? I swear she is an almost 4 year old child trapped in an almost 17 month old body. Her mind is so incredibly curious and always working. We have heard that is the same for most children with SMA. Little brainiacs, and I love it. I just wished that SMA were not part of the equation.

SMA is also scary in that when I say it takes, I mean it takes. Two absolutely beautiful little girls have now become angels this week due to this horrible disease. They shared the same zest for life that Getty does and it breaks my heart every time I hear of a new child earning their wings, it simply isn’t right. It reminds me that as a mother I can’t waste a single second with Getty because you literally don’t know what tomorrow will bring. But I do know is that while their time here may have been shorter than most children, they were loved beyond belief. Their parents gave them every single opportunity to live life as their own and were surrounded with all the love and support any child should receive. But they too deserved more time with their mommy and daddy. I hate SMA.

The scientific aspect of SMA might be difficult to understand and just when I was trying to formulate what I was going to say, a visual aide dropped into my lap just like that. So here it is, take a look at it and I will discuss it further in a second.

Okay so for a moment let’s name these two people, Kate and Mark.

Kate and Mark unknowingly have been SMA carriers all of their lives. Carriers do not show any symptoms of the disease, they are just carriers of this recessive gene. Since they are carriers, that means they must have been given this recessive gene for one or both of their parents.

So they went about their lives. They grew up, played sports, went to high school, they graduated from college, they got careers, met and fell in love. 🙂 Still never knowing they were carriers because no one in their immediate or extended family were affected by SMA.

Got married, never got tested, got pregnant, never got tested, had a beautiful baby named Getty with SMA.

You might be thinking how does this all happen? So here is where the visual does a great job of explaining.

Kate and Mark are each (1) in the 1 in 40 people unknowingly carry the gene people. They unknowingly passed SMA along to Getty. Since they are both carriers they had a 25% chance of passing SMA along to Getty.

Theoretically every time Kate and Mark have a child, there is always a 25% the child will have SMA.

The reason for this visual is not really to show how you pass along SMA per see, I mean it is, but what I would like to focus on is the passing of the SMA carrier gene.

If you are a carrier you have no symptoms.

1 in 40 are carriers.

Do you see how many people we are literally talking about that don’t even know they are carriers?

So basically carriers are also creating carriers, so they are multiplying essentially and most of you don’t even know it. That is what scares me, frankly.

Can you imagine how powerful it would be to find out if you at least carry the SMA gene? You could be educating your entire family for generations just with a simple blood test.

So now what? My hope is that in some way I can convince some of you out there to get a SMA carrier tested. Even if you have healthy kids, even if you have no prior family history of SMA.

So how do you get one? Most insurances cover the test. I am currently working on whether Medical pays for it, and as of right now I think it is a no, but I am doing more research. You just go to your doctor and you say, “I’d like to find out if I am a SMA carrier.”

It is a simple blood test.

If you don’t have insurance there are a couple of companies that do make the test and can be administered in a lab or doctors office.

Here are a couple in alphabetical order:

Athena

Counsyl

Genzyme

Genetic counselors are terrific resources for anyone that might have even more questions about the test and the science about SMA. We work with our genetic counselor all the time and she has been a tremendous help.

SMA Awareness Night

Tonight, the second Saturday of August, we light candles around the world to honor those living with and lost to Spinal Muscular Atrophy.