Getty Owl Foundation

Thank You SMA Families & Friends!

From Kate:

I wanted to take a moment to thank all of the SMA families and friends that offered to donate art pieces and silent auction gifts for not only our online auction, but our 2nd Annual Hoot the Grid. I love this time of year because we get to raise awareness more, since it is National Awareness month. We get to show our community that SMA has a name, a face, and that we are no different to anyone else in this world.

I was approached by a woman the other day that asked about SMA, to which I was thrilled. While we are in conversation she told me that she couldn’t be a carrier. She had a beautiful, non-SMA kiddo so that meant that she was not a carrier. Ahhh, what a teachable moment I thought to myself. I basically told her this, without the visual.

She paused a moment and then thanked me for putting it such easy terms. Then she said, “well if I get tested, I could have any kind of SMA, aren’t there like tons of mutations?” To which I did another fist pump of happiness and I told her, “no”. “you either have the SMA carrier gene or you don’t”. “It is that simple?” she said. And I said, “yes”.

Folks, this is why we do what we do. This is why we do events online and in our community. If we can reach one more person in the very least , to learn about SMA, we are satisfied. My hope is that the mom I spoke to will go and tell someone else and then that person tells someone else, etc.

So thank you to all the families and friends that helped make these events possible. I was asked that very same question, several times online during the auction as well as at our event here in Sacramento. One person at a time.

Thank you to:

Miss Stephanie Tomasegovich

Mr. Jeffery Lorenzen

The Goeppert Family & Nana Teri

Miss Morgan Saunders

Kaige’s Uncle Ryan and Sister, Paris

The McClain Family

The Kennedy Family

The Miller Family

The Sniezek Family

The Burks Family

The Calafiore Family

The Lohin Family

The Bundy Family

The Gooden Family

The Barnett Family

The Poluchowicz Family

The Pruitt Family

Mr. Ivan Pretorius

Miss MJ Purk

The Bonelli Family

The Shifflett Family

The Reed Family

The Engle Family

The Lorey Family

The Reed Family

The Gardner Family

Stacey Ball

Miss Getty Spaghetti

Thank you all for helping us make this event a reality two years in a row. We are ever so grateful and we appreciate the time and effort you all made to help us educate not only our community, but anyone that reads our blog.

I am still crunching the numbers. I will update on how much we were able to raise in a bit.

Ms. Strong Goes to Washington

From Mark:

Ms. Gwendolyn Strong is quite the inspiration! You see, Ms. G is not only defying the odds each day, but she just finished her first day of Kindergarten at Washington Elementary!

Gwendolyn has SMA Type 1, just like Getty. She was born in October 2007, and hospitalized by December. There she stayed for her first Christmas, and went home soon after New Years.

Infant botulism, they thought. It wasn’t until about 4 months later, Gwendolyn’s doctors figured it out and her parents first heard those three cursed words: Spinal Muscular Atrophy. Suddenly, infant botulism sounded like a walk in the park.

Over time, Gwendolyn became full-time vent dependent (bipap) and has been in and out of the PICU. However, in that time, she has done many wonderful things, like travel cross-country, drive a power chair, visit Disneyland, and accompany her family on the beach. In 2009, she also inspired her parents, Bill and Victoria Strong, to launch sister SMA organization, Gwendolyn Strong Foundation.

Bill and Victoria were one of the first SMA families we contacted when Getty was diagnosed in July 2010. They gladly gave us input on launching Getty Owl Foundation in January 2011. Their personal and professional input was and has been invaluable.

Now, despite SMA, its complications, its hardships, the ever-present fear of potential illness, and the fact that Gwendolyn was admitted to the PICU for an emergency blood transfusion less than two weeks ago, Ms. G just finished her first day of Kindergarten. I know parents of healthy kids can be nervous on the first day of Kindergarten, so I can only imagine the knots in her parents’ stomachs.

She met new friends, listened to stories, and got to hang her backpack on a hook. I’m sure that sounds like normal Kindergarten stuff to a lot of people, but to an SMA family . . . IT’S HUGE!

All too many SMA families can only dream of their child doing something as simple as hanging a backpack on a hook in Kindergarten. There’s a little SMA angel, named Amanda, who earned her wings at age 21 months who always comes to mind first when I think of these things.

We are so happy for Gwendolyn, Bill, and Victoria. “It was a really emotional day for all of us. It went great and we’re off to a really good start with the makings of hopefully a wonderful year for G,” Bill said.

SMA comes with a lot of pain, turmoil, frustration, despair, and exhaustion, but triumphs like these help keep us going. Congratulations!

Victoria, Bill, and Gwendolyn Strong

Everyone Deserves A Second Chance

From Kate:

Quickly wanted to thank those that have purchased artwork. This will be the last post about the auction before the wrap up  post sometime next week. There are three pieces that did not find homes, so I wanted to give them one more chance to be bid on.

Auction Item #1

One if by Land, Two if by Sea

Click HERE to Bid!

Auction Item #2

Rustic Country

Click HERE to Bid!

Auction Items #3

Say Yes to the Dress!

Click HERE to Bid!

Auction Item #4

Windmill

Click HERE to Bid!

SMA Art Auction Day #6

From Kate:

Okay here we go.We have three for today and then Monday will be our Second Chance Auction for all the pieces that need to find just the right home. I hope you enjoy these pieces. Day #4 and Day #5 are still up for auction, go check them out as well.

Auction Item #25

Beach

Click HERE to Bid!

Art Auction #26

Elise

Click HERE to Bid!

Art Auction Item #27

Friends

Click HERE to Bid!

We Interrupt This Broadcast…….

From Kate:

I decided to take a day break from our art auction. Getty and I had a wonderful morning with a dear friend, Aunt Patti and now we are off to nap and snuggle.

There is still time to look at and bid from Day #4 & Day #5! I hope you can take a minute to check them out.

Some of the art pieces did not sell on their particular day, so I think I will have one day called, “Second Chance Day”. Since we all deserve a second chance, I want to devote one day for all those great art pieces that just couldn’t find the right owner. So tomorrow will be the remaining pieces that have not been seen before as well as the second chance pieces.

Just like last year, this has been a lot of fun. I love wrapping up the artwork and sending them around the United States to people I do and don’t even know. SMA awareness is spread, money is raised for the Gene Therapy Program at Nationwide Children’s Hospital and the buyer has a really cool piece of artwork. Win, win all the way around.  Thanks to all the people that have bought an item so far. We appreciate it.

The only other event I wanted to plug quickly before I dive into Getty’s bed to snuggle her is the River Cats Game night which is this Saturday night. Click on this link if you are interested in joining us. A small portion of the ticket sales go to Getty Owl Foundation, but you need to go through our link so we can get credit for your purchase.

Thanks again.