Getty Owl Foundation

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.

We Couldn’t Do This Without You! Part 3

From Kate:

On the eve of the events tomorrow I wanted to thank some really incredible people that have been so supportive from the beginning.

Thank you to our board, Stacey, Takoa, and Morgan who have helped so much to make sure the walk and art auction the success it will be tonight. Thank you for your time and commitment to help us fight. Just when Mark and I get tired, all three of you keep our spirits high and our minds focused on the goals we have set. We thank you for giving up precious time with your family to help us plan and execute.

I want to thank the walkers for coming out tomorrow. We have over 100 shirts ready to be worn and over 200 SMA Awareness bags to be handed out. I thank you for taking the time out of your day to help us spread some much needed awareness in Sacramento.

I want to thank our families for being so supportive of us. Thank you to the Mathany family and the Stump family for believing in us, supporting us, as and encouraging us to keep fighting for what we believe is right. We hope we are making you all proud.

On behalf of our entire family we would like to thank Ben Schenkel from the Sacramento Bee. We were so excited to get the chance to share our story and to help shed some light on SMA in the Sacramento Region. We really appreciated the time and effort you put into interviewing us. You can imagine our excitement when we opened The Bee to see our sweet Getty on the front cover of section B. We were equally impressed by how you were able to really understand how we view SMA. You understood our passion to help end SMA and give Getty every chance she has to live a wonderful life as all people should. Thank you for explaining the science behind the disease and the cutting edge research now being practiced. You did our community a huge service to shed light on SMA. Thank you for telling our story, we are honored.

If you have not read the story in today’s Bee, here it is. There was one slight miscommunication and that was for the start time of the walk. The walk begins at 6 pm and not 5 pm.

We Couldn’t Do This Without You! Part 2

From Kate:

When thinking about how to bring awareness to Sacramento for this year’s SMA Awareness Month, I was nervous, to be honest. I just wanted people to “get it.” I want people to get that this reality could be theirs without getting screened. The shock of being told their son or daughter has SMA is a real situation, and without a cure, more children will be affected and more families will be given the dire prognosis of 2 years or less.

I want people to get that the diagnosis can feel very isolating for a family as well. I remember when Getty was first diagnosed. There was an immediate feeling of “who would understand what we are going through and feeling?” No one we knew had SMA, and it seemed as though we were the only family in the area that had this diagnosis.

Social media saved out souls, quite honestly. Within that first week, Mark and I “met” many SMA families around the US and around the world. We met families who had children the same age and type as Getty. We met families who had recently experienced the passing of their own child. We met adults with SMA, and everywhere in between.

I can’t emphasize enough the comfort a phone conversation or email brings when talking to another SMA Mom or Dad. The strength that comes from the other end of the line is motivating and inspiring. When I am having a difficult day, I know all I need to do is have a quick chat with any other SMA Mom and I know they “get it.”

These families are in a constant fight for their child’s care, they are constantly researching and asking questions of the health care providers, they are amazing parents. I remember a fellow SMA Mom once said, “I wish I had never met you all under these circumstances, but so incredibly fortunate to have you in my life and my child’s life.” It is bittersweet.

We have made some everlasting friendships and I think it is safe to say that Getty’s health is good today because of the support we have received from the SMA community. Without a doubt you have saved our daughter’s life on numerous occasions and we are forever grateful.

The theme for the SMA Art Auction is “Celebration of Life”. All human beings fighting this disease fight it with dignity and grace, unlike anything I have ever been witness to. Getty and all of her friends are simply beautiful souls that love life and are surrounded by such an immense amount love. I wanted to celebrate that. I also wanted to celebrate the love our families have for their children. It is inspiring, it is infectious and it is an energy that is like no other.

I asked the SMA community a few months ago if they would like to donate artwork for the art auction and the support was breathtaking. Each piece of art that will be shown Saturday night was either made from a child and/or adult with SMA or a their family member.  Every single piece I am sure was hard to part with. Great care went into every piece made and that alone makes them so special.It was a labor of love to frame them and name them.

I want to thank all of the SMA families and individuals that helped make this event possible.

Thank you families, we appreciate your support and love.

Thank you to the

Pruitt Family

Tapia Family

Banjany Family

Kennedy Family

Gaynor Family

Schmid Family

Butler Family

Lopes-Navarro Family

Jones Family

Barberena Family

Strong Family

MJ Purk

Gooden Family

McClain Family

Ramsay Family

Reed Family

Worrellia Family

Daya-Angelini Family

McDonald Family

Burks Family

Zahn Family

Goeppert Family

Sarah Carlson

Van Fraassen Family

Moroney Family

Barnett-Davis Family

Bundy Family

Anderson Family

Henretty-Sniezek Family

Calafiore Family

All of the artwork will be on sale and all of the proceeds will be going to the Gene Therapy Program at Nationwide Children’s Hospital at Ohio State University. Getty Owl Foundation has committed to raise $5,000 to help find a cure for SMA.

We Couldn’t Do It Without You! Part 1

From Kate:

You know planning an event certainly doesn’t work without support. In my three part series called “We Couldn’t Do It Without You” I wanted to highlight and thank those companies and individuals that have really made both SMA Awareness Month and Hoot the Grid & SMA Art Auction what it will be this Saturday, which is AWESOME!

Getty Owl Foundation would like to thank Adam and his staff at AJF Salon for hosting our SMA Art Auction this August 13th from 7-9pm. We thank you for your support and for believing in our cause.

Thank you to our friends at Honey Agency who are some of the most creative honey bees we have every met. 🙂  We are so thankful for their time and energy to help us promote our foundation and events. And just wait till you see our new website they developed for us, simply amazing!

We would like to thank Justin Berenstein, GSM of Roseville Mitsubishi-KIA. Thank you for your generous donation to help  make sure that all of our Team Getty warriors have great t-shirts to wear for our SMA Awareness Walk.

We would also like to thank Dave and Bob over at Capitol Digital Document Solutions who printed all of our promotional materials. And thanks to Anthony who drove over all of the materials to our house. That was very sweet of you. 🙂

I won’t lie, we have simply been blessed with support since Getty Owl Foundation began in March. It has been so wonderful meeting new people and explaining why we fight every day to end SMA. It feels as though they genuinely get it. I think the passion they feel for their own business in some ways allows them to relate to our fight. As I was soliciting for sponsorships and donations, I never got one person who didn’t at least want to hear our story and ask tons of questions about SMA. They could have still turned me down for a sponsorship, but everyone was very gracious and so respectful to the info I had to offer.

So without further ado, I want to thank the following companies for sponsoring our event, donating a silent auction item, donating beverages, donating food, donating their time, donating their services, and last but certainly not least, housing a sweet owl for our Owl Hunt. We cannot thank you enough. In a time when our economy is still shaky, I thank you for your trust and willingness to support a great cause.

Cupcake Vineyards

Downtown Grid

Thread Safe

The Old Spaghetti Factory

Yelp

Abundance Vineyards

Rominger West Winery

Tiny Prints

ProFlowers

Kirkwood

Clif Bar

Opa Opa

Centro

Ladybug, Ladybug

Chicago Fire

Starbucks

Birkenstock Midtown

Tapa the World

Yummy Yogurt

Garlic Shack

Cuffs

French Cuff Consignment

Swanberg’s

Okay do you see what I mean? Amazing! We are simply humbled by ALL of the awesome companies supporting our events. Thank you all. We can’t wait for Saturday!!!!

And just in case you missed anything about “Hoot the Grid & SMA Art Auction” here you go!