Getty Owl Foundation

1 Week to go! More Cool Details and Oh My Goodness It’s Next Sunday!

From Kate:

You know when you have been looking forward to something for so long and then you come upon it and you think, “oh my goodness” it’s like next week. I am having one of those moments. No several, I’ll be honest.

Before I get to any new details, I want thank some people and companies that have just been so generous with either their time, hard work, monetary donations as well as in-kind donations, logistical help, you name it. I would like to thank our GOF board for all their hard work. Sunday will be the BIG day, but along the way we have all taken on responsibilities and I want to thank all 4 of you and 1 far, far away who has still made an impact. Thank you Stacey, Mark, Takoa, Sarita, and our temporary Aussie, Morgan. I would also like to thank our volunteers now who will be helping us in all kinds of ways on race day. You will be pulled in all kinds of directions, but I know you will all do a great job. It takes a village to accomplish an event like this, so many thanks to everyone involved.

This past Saturday we stuffed 1,000 goody bags. These goody bags will be going to all the registered runners/walkers. I want to thank the crew that came out to stuff so incredibly quickly. 1,000 bags is not an easy task and you guys did awesome. It was early in the morning and you were there ready to go. Thank you.

There are a couple really cool coupons inside the goody bags I think you should be aware of and save:

-Crocker Art Museum 2 for 1

-California Museum 2 for 1

-Joe’s Crab Shack will be putting on a fundraiser for us on March 7th. Keep the coupon when you go and 10% will go directly to Getty Owl Foundation. 

It has been nice to have a year under our belt. Certain things that stressed the heck out of me last year, seem to be no big deal. I hope that means it will be even smoother this year. 🙂

Some cool additions this year include giveaways at our 1/4 mile kids run. Before the run we will be giving away family 4 pack tickets to:

Sacramento Children’s Museum

Sacramento Zoo

Fairytale Town

Disneyland

* All pre-registered kiddos for the 1/4 mile run will be entered, so since this email is coming out now, I have a total of 64  kiddlets who will be able to win any one of these cool prizes. I would like to thank each company for donating their tickets.

After the 1/4 mile races are over, each child will receive a really cool ribbon. Our way of telling you how awesome you are and to encourage you to run another race in the near future. Running is fun and if you can run with Dinger, how much better can it get. 🙂

This year, we are changing from cotton to tech shirts. Very excited about that indeed. I love running in tech and I hope you all like them as well. I want to keep the image a surprise, but I would like to thank you Honey Agency for the awesome design. I would like to thank Kellie from Capital Road Race Management and Julie from NorCal Ultras.  I have learned so much from the two of you and I look forward to putting on another great event. Our 5am set up time is a killer, but it is well worth it.

I would like to thank all of the sponsors that have really stepped in to offer manpower, donations of all kinds, and support to the Getty Owl Foundation. For our second year, so many of you have stood by us and I cannot thank you enough.

Medals for all age group winners and awards for overall winners of both men and women will be awarded with special gifts. I was going to have this also be a secret, but why not, here are the medals. 🙂

Who will walk away with one of these beautiful ladies?

Our post-race festival will be terrific. Bigger and better than last year. Here is a list of vendor booths that will be there to support the Getty Owl Run/Walk. Click HERE! You will have a great time. Stay, hang out, eat, linger, meander, and enjoy the day. 

We will have our Getty Owl Foundation booth out there front and center. Stop by to learn more about SMA. Pick up information cards. Spin our wheel for fun prizes and finally we are organized enough this year, that we will have shirts, sweatshirts, hats, bottles, etc. for sale. It may be too late to buy your GOF gear online to have it for the race, but we do have a shop online as well. Prices will be cheaper on race day. Stop by and pick up some Getty Owl gear to help us spread the word.

I peeked at the registration numbers tonight and we have increased since last year. My hope is to hit 1,000. If the trend continues my wish just in fact my come true. Can you imagine 1,000 people coming to participate, learning about Spinal Muscular Atrophy, and having a great day enjoying time with family and/or friends on a non-rainy day. Oh, I already looked, no rain. 🙂 I am getting goosebumps.

Today, prices for registration have gone up. 5k and 10k have gone up to $37 and the 1/4 mile kids race will remain $15. If you have not registered yet, click here to do so. You can also register the day of and still be timed, which is cool.

Before I forget remember you can pick up your registrations before and the day of the event. If you want to get them early stop by Fleet Feet in Roseville. Click here and scroll down for time and days.

It has not been easy to take a step back and just enjoy the moment, but I certainly will try on Sunday the 24th. I look forward to working together to put on a great race and overall day. I look forward to seeing some very special people in the crowd. Many SMA families will be there in support and I am so looking forward to giving and receiving hugs. This day would not be complete without having Miss Getty and her daddy there to celebrate the day. All of this is for you my dear. All of it. I love you.

Getty Owl Foundation on Forum! [Listen]

From Mark:

Kate is raising SMA awareness in a podcast interview on Forum, Sacramento’s Digital Town Square! [Click to listen]

Kate isn’t able to get out very much, being a wonderful mom to our Little Owl; but when she does, she really makes it count! I am so proud of her for all she does for Getty, for Getty Owl Foundation, and for the SMA cause.

Thanks so much to Forum, Patrick Kennedy, and Isaac Gonzalez for inviting us, helping raise awareness of Spinal Muscular Atrophy, and your contributions to the Sacramento community.

There is a Story Behind Every Picture.

From Kate:

Thursday was no different from most. I got up early to get some things done for the run. Getty awoke from her slumber a couple of hours later, only to yell at me all the way down the hallway that the princess has awoken. I wait patiently for my 3rd cup of coffee to be done, so I can scoot to her room.

I get there to see some big blue eyes looking back and a morning squeal. Mama loves those squeals.

Our daily routine now has included Tinkerbell. Any Tinkerbell movie will do, but she has grown profoundly accustomed to these movies than others. Before she wouldn’t care what was put in front of her. Now she knows exactly what she is watching and when to giggle and when to sigh, etc. My little girl is growing up.

Since birth we have slept together. She has always been on my left. It is like we are an old married couple that have our routines even in the bed we sleep in. I know exactly when she needs to be repositioned. She knows when I am faking sleep, because she chats at me. I know when she is falling asleep because she makes the most subtle of sighs which tells me the time has come.

In the morning before we get the day started we do her first of three breathing treatments. They are spread throughout the day. Each treatment lasts about an hour. It consists of suctioning, a cough assist machine, a nebulizer if she needs it, a chest percussion machine that shakes everything up in her lungs, so hopefully we can get her airway and lungs nice and clear for the morning, etc. There are sets of things, brush teeth, etc, etc.

Anyway by the end she is dry, clear, clothed, and ready for the day.

I do my best to keep as much variety of play activities in the house. Today I thought it would be fun to draw. I had set up the coloring easel, her PVC pipe arm sling contraption was in place and all I needed to do was scoot her in and “we” could draw. put her arms in her slings. Asked her what color she wanted to draw with and then I picked one for myself.

What transpired was heartbreaking, scary, and  incredibly magical.

Getty started to cry. I mean like cry to the point of desating her O2 into the low 90’s. And her heart rate went up into the 150’s. For perhaps non-SMA families this may not mean much, but for us and for me at that moment I was calmly freaking out. Mark was not here. I was on my own to “fix” this. So you go into triage mode. Suction to get rid of the secretions so she does not choke or aspirate on the saliva. I had her cough assist ready just in case I needed to simulate coughs to really get down onto her lungs to pull up anything that may be down there. I talked calmly to her to see if I could get her focused on my calm voice and reinsurance that everything was okay.. Was she hurting  Did I do something when I transferred her to her portable chair? Did she have an ear ache. checked her ears. Did she have a temperature? I checked, no, wasn’t that.

I finally figured it out after I left the marker in her arm sling and moved out of her view. She just wanted to draw by herself. The tears dried, the coos came back, and her sweet little hand swung like she was flying like a bird.

I just sat there and cried for awhile. My baby was fine, so the adrenaline of the feeling of emergency was slowly leaving my body but filling it with extreme exhaustion. But I was mostly crying because she is a little lady and she does deserve her special space to create on her own. Granted it may not be the traditional sense of the word, but it is her’s and at the moment she needed mama to step back. I was so proud of her and I was also sad that she was getting older and that she didn’t need me to hover.

Her final work was an absolute masterpiece.  I could tell that after she was done and I  peek around to see her face, she was full of confidence and ready to show it off. 🙂 I am so proud of her.

Here is Getty’s masterpiece.

After I left her view I videoed Getty creating. There is a point in the first video that she stops for a time. I originally thought she was finished drawing but at closer look, I realized that she was keeping her marker on the page longer to make color circles. So smart.

My girl is growing up and now I need to continue to learn more aspects of her as a whole so I can help her grow in as many ways as she wants. I am a lucky mama.

Here we go……2nd Annual Getty Owl Run/Walk

From Kate:

I am so very excited to announce the 2nd Annual Getty Owl Run/Walk is Sunday, February 24th in Sacramento at Crocker Park.

Planning a run is no easy feat. It seemed as though once last year’s run ended the planning  for this year’s run began. Getty Owl Foundation puts on several events throughout the year. I’ll be honest, the run is very special to me for a couple of reasons and I feel like with each passing year it will be even more of a labor of love.

Having so many people in one place to celebrate family and community makes my heart skip a beat. Knowing that every single person attending will know or hear something about Spinal Muscular Atrophy is something you cannot put a price on. To think that in the very least our participants will take the knowledge they have gathered and tell someone else one day. That is cool!

There are some really great additions to our race this year. First of all we are going “tech”. Our Getty Owl race shirt will be tech to all who register. I wanted to do this so bad last year, but we simply did not have the budget for it. But this year, it’s on! Tech shirts are lightweight and breathe well while you run. And they seriously last forever. We have a new race image on the front that I know people are going to love.

The race routes will remain the same from last year. We received some great feedback from runners and walkers alike that they enjoyed the scenic view of the Sacramento River.

Times for races will be the same:

1/4 mile Kids Run: 8:05am

5K & 10K Run/Walk: 8:30am

Okay so let’s talk about the 1/4 mile Kids Run. We have been overwhelmed this entire year with such gracious donations from all kinds of companies/organizations. So we decided to take three of them and make them giveaways. Promptly at 7:55am-ish Dinger, from the Sacramento River Cats and I will be pulling 3 lucky kid’s names for some really cool prizes.

4 Tickets to Fairytale Town

4 Tickets to The Sacramento Zoo

And…………………….

4 Tickets to Disneyland!!!!!!!!

Cool huh?

In order to be in the drawing you must sign up pre-registered for the 1/4 mile Kids Run. Meaning that you will not be in the running for the tickets if you are a late-register or register the day of. So if that isn’t incentive to sign up soon, I don’t know what is. Last day to pre-register is February 17th.

This year will have a lot of the same aspects of last year. All registrants will receive a tech shirt, goody bag, and post-race hydration and nutrients.

We will again have a post-race family festival. Vendors are being added pretty much every day. We want to thank the companies that have made it a priority to come support the race and our foundation. Here is the list so far of the incredible companies at the festival.

Age group winners will be announced and will receive a custom medal and gift for their hard work and accomplishment.  Award ceremony will begin at 10:00am in the park.

For all other event details either click here. Or go to the top of the page and find the “Events” Page on the website that has ALL the details from Race Info to Post-Race Sponsors. 

I want to take the time to thank several people and companies that have helped the Getty Owl Run/Walk possible. I would like to thank our crazy Getty Owl Foundation board of directors. Crazy meaning good. You all keep me grounded and I appreciate that and all of your hard work.

It has been a pleasure to work with Kellie and Rich from Capital Road Race Management and Julie from Nor Cal Ultras. Thank you all for your help and advice. So excited to put on another great race with your support. 

Last but certainly not least, our sponsors. When organizing any event, if you don’t have businesses supporting your efforts, an event just can’t happen. I would like to thank our major sponsors:

California Family Fitness 

Raley’s Supermarkets 

The Honey Agency

Fleet Feet Sports

92.1 K-Hits 

We would like to also thank many great sponsors that have helped make our upcoming 2nd Annual Getty Owl Run/Walk a success.

Check out these sponsors.

With the race only 1 month away I wanted to let everyone know who  is reading this post that we appreciate your support. We created Getty Owl Foundation to be a part of the solution. We wanted to do what we could as a family and as a foundation to help fight Spinal Muscular Atrophy. SMA is cruel. As Getty gets older, she loses the very simple aspects of life that we may all take for granted. Eating, swallowing, standing, walking, jumping, hugging, talking, smiling….. We want to help end this disease not only for Getty but for all children/adults diagnosed with SMA. Even with the extensive list I have mentioned, in the same breath, there is so much hope on the horizon in regards to research to help find a viable treatment and/or cure.

We were told that Getty would unlikely see her 1st birthday, let alone her 2nd. As a family we are so proud of our little owl, rather little lady owl, she is surpassing all the statistics and there is no stopping her. She will be turning 3 in March, Hoot! Hoot!  This year, not only will Getty be in attendance for the run, but so will many of her SMA friends that are also defying the odds. We are so thankful to be in such good company. We look forward to walking together in solidarity that our kids are warriors and they love life and they do deserve a cure.

With the accompaniment of technology, Getty can speak with the assistance of a computer and very soon Getty will be traveling around with the assistance of a power chair.

That is what this event is about. Educating the public about SMA and helping to raise money for research that one day, someday soon researchers will find a viable treatment or cure for all of our kids and adults and those that have yet to be born.

We hope you register for our 2nd Annual Getty Owl Run/Walk.  We hope you have a wonderful time. We hope that you walk away from the event knowing more about SMA than you did before and we hope that you take what you have learned and tell others. Knowledge is very powerful.

On behalf of our entire board of directors at Getty Owl Foundation, we thank you for helping us be a part of the solution.

Oh and it is the end of February, it will be cold, dress warm. I have already told mother nature not to rain. So we are covered. 🙂

Hope to see you there. Register HERE is you are ready to go!

The Lonely Goatherd

From Kate:

At some point over the Christmas break, Getty and I watched The Sound of Music. I really enjoyed it as a kid, even though I was never able to quite finish it, due to its duration. But you know Getty certainly did. She was glued.

Julie Andrews, hands down is one the best singers of all time. Her passion and animated songs are so very timely and beloved. So when it came on at some point in these past few weeks, well I thought maybe Getty would enjoy it, purely for the uplifting songs. SHE LOVED IT! I was so happy. Her eyes were glued to the TV and when Julie Andrews would hit those high pitches, she was just so excited. A few of the songs she liked more than others, as you can gather.

She loves Do-Re-Mi. That is one that her mama can hang with. I can also sing, (not good mind you) Sixteen Going on Seventeen. There were times during the movie when she would look up at me as if to say, “how do you know what they are about to sing mom?” That look is priceless. Then she goes back to watching the movie. She had a few meltdowns, as to be expected after a song was over. We are still working on that. Oh and she also really likes My Favorite Things.

But there was one in particular that completely got her attention. Since that night I have purchased the album and found the best Youtube version of the song for her to see and hum to. The Lonely Goatherd is the cat’s meow right now, or maybe the goat’s yodel. 🙂 I am doing my best to yodel, not quite how Julie Andrew’s would have done it, but I am trying my best. Getty LOVES this song and add a few puppets, SOLD!

So I am guessing perhaps Getty and I will be getting into music theater soon. I will need to find another fun musical for her to swoon to, just like The Sound of Music. Suggestions are very welcome.

Here is the best video I could find online of the song. I give you The Lonely Goatherd. 🙂

http://youtu.be/7_PJPDMXHOw