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Last Chance 2011

From Kate:

Since the end of year is coming quickly, I just want to remind everybody about our tax exempt status. We are a 501(c)(3) public charity and donations are tax deductible.

There are many worthy charities out there. If you are making a year-end charitable donation, please consider Getty Owl Foundation. Your gracious donation will help raise SMA awareness, assist families affected by SMA, and accelerate research to help find a treatment or cure.

If you would like to donate, click here or click Donate at the top right corner of our website.

Thank you and Happy New Year!


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Merry Christmas to all!

From Mark and Kate:

We just wanted to wish everyone a very Merry Christmas. To all of our family and friends, we love you.

We wished about Getty’s 2nd Christmas and 21 month Birthday and here we are, as a family, spending this special day together. Santa, if you arranged this, well then we thank you. Of all of the houses you need to stop by to make kids’ lives better, you managed to stop by ours to give us the gift of time. Time will forever be precious to us. So let’s just assume that is our family’s forever wish, Santa. Make a note of it. 🙂

We wanted to share a special video Morgan made for our family. She came over Friday night to take holiday pictures. Morgan, thank you for capturing a very special night for us as a family. Reflecting on last year, it is clear that Getty is blossoming into a little lady before our eyes. What a blessing it is for us to witness.




Active 20-30 & The Rocks – One never stands so tall as when kneeling to help a child

From Mark:

In this season of giving, I would like to take a moment to recognize and thank the Active 20-30 Club of Sacramento (Club #1), Greater Sacramento (Club #1032), and my good friends therein.

When I first moved to Sacramento from Southern California, I didn’t know a soul here, except my good friend, Mike Rockenstein (“Rock”). I had known Mike since elementary school and we were good friends through graduation at Camarillo High, in the heart of California’s golden sun and dew.

Like many people, Mike and I drifted off to do our own things after high school. I went to Long Beach and San Diego while Mike went to San Luis Obispo and Sacramento. When we reconnected nearly a decade later, we picked up right where we left off. It was just one of those things where no matter how far separated you are in time or space, the friendship remains.

Mike and his now-wife, Jill Rockenstein, graciously took me in when I moved to Sacramento as I got on my feet. They also got me involved in Active 20-30.

The mission of 20-30 is to provide young adults with an opportunity for personal growth, friendships, and leadership development while improving the quality of life for the special needs children in the community. Over the years as an active member of Club #1, I held several titles and sat on the board of directors. I was engaged in many fundraisers and benevolent events to benefit Sacramento’s less fortunate children and families. I took part in distributing club funds to some wonderful local children’s charities. I also made some great friends in Active 20-30. The Club lives up to its mission extremely well.

When Getty was diagnosed with SMA in July 2010, suddenly, she was one of the special needs children and we were one of the local families in need. At the initiative of Mike and Jill Rockenstein, the local clubs pulled together and provided us help. We received some wonderful words of encouragement and support from friends in the clubs.

Further, the personal growth, friendships, and leadership development I gained through the club provided me the confidence and experience necessary to launch Getty Owl Foundation with Kate. My desire to start Getty Owl Foundation with Kate came in large part from my participation in Active 20-30.

As if that is not enough, thanks to Rock, Active 20-30 #1 made a generous donation to Getty Owl Foundation in sponsorship of the Getty Owl Run/Walk coming up on February 26, 2012, in Sacramento.

I am proud to be a past-active member of 20-30. To Mike & Jill Rockenstein, to all our friends and supporters in 20-30, and to Active 20-30 #1 and #1032, we are so very grateful for enriching our lives, supporting Getty and our family, and helping Getty Owl Foundation succeed.

Another good friend through 20-30, Greg Ignoffo, also secured a generous donation to Getty Owl Foundation through HMH Builders and Swinerton Foundation. Thank you, Greg, for your friendship and to HMH, and Swinerton!

Thank you, Merry Christmas, and happy holidays! Hoot hoot!

“One never stands so tall as when kneeling to help a child.” –Active 20-30






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Getting In The Spirit

From Kate:

Reflecting quickly on last year, we had just kind of settled in after Getty’s G-Tube and Nissen surgery. We were trying to get a routine established, which, as any family would know, changes all the time. Changes for us are a little different. We needed routine on how to feed, at what rate to set the feeding pump, how to care and clean the g-tube and the skin surrounding it.

We were just introduced to the bipap machine last December. Bipap helps Getty rest so she doesn’t have to do all the work of breathing by herself when she sleeps. It doesn’t breathe for her, but it helps kick in and support her if she does need help.

Along with bipap, comes a lot of nuanced knowledge that seems second nature now, but felt like another mountain of education back then. What are the proper settings? How will we know if she isn’t getting the support she needs? What about her CO2 levels? How does she eat while asleep and on bipap with all of the air swooshing into her lungs? What about skin breakdown around her face over a period of time while wearing the mask? What if she doesn’t respond well to the machine, then what? And what do all the relentless alarms mean?

Again nuanced. Overwhelming last year, part of the routine this year.

Last year we had just enough energy to buy a tree, get some lights on it and find as many owls as we could for ornaments. Some people sent us some, which was incredibly sweet. But we were stressed, overwhelmed, and still pretty unsure in this journey. But there was Getty, in usual fashion, smiling as happy as could be.

What a peanut!

So this year has already felt a lot different. We don’t feel the crazy anxiety that comes with the unknown in terms of care, machines, fighting doctors, emergency and clean protocols. Our new normal is that all of those things are normal. We are just so incredibly thankful that our sweet owl is with us today so we can have a quiet and wonderful holiday season. We can start family traditions and we can be so thankful for more time with Getty.

So in keeping with that focus of starting traditions, we have made a few. Our owl Christmas tree has become very populated with all kinds of unique owls. I was in a store the other day buying another cute owl and the lady at the counter said, “Well it is always good to have an owl on your tree for safety.” I smiled, but I was thinking. “What if I told you I have 30 owls on our tree, does that mean we are Fort Knox?”

So here are a few additions to Getty’s tree.

So many different owls, it is a lot of fun to just gaze at them. Each in its own way resembles a part of Getty’s personality. We love it.

One tradition that we started this year is the Christmas Advent Calendar. Getty was not having it at first. The routine is I carry her over to it, Mark takes out the little Santa, then Santa gives her all kinds of kisses, and then we talk about how he was in a date and then he is moving to another date. Not sure how much she was grasping the concept of numbers and sequence, but she sure did love the Santa kisses. The first few days, she just kind of looked at us like we were crazy and now that we are further into the before bed routine, she gets all excited to be escorted to Santa. 🙂 Some nights we even get giggles.

The next one, I am not sure if it will make the tradition list. But we sure had a fun time making it. First, let me show the picture of what it was supposed to look like.

Easy enough right? WRONG! They trick you into thinking this “kit” will give you the ability to replicate this winter wonderland. 🙂 So my mom (grammy), Getty, and I created our own version. 🙂 Let’s just say that our house would not pass a housing inspection.

This house was made with a lot of love. I am only sharing the front of the house, because we used all of the icing to hold this skyscraper together and to decorate it. It is still standing today, so not too bad. We added the lights. 🙂 Getty was a big help.

Getty’s partner in crime, Richie Tenenbaum needed to snuggle Getty’s neck throughout the entire process.

Getty helped with the icing for the house. We had to get it off her hands quickly though, it started to harden and so her hand was almost in concrete. 🙂

Getty helped pick out candy for the house decorations.

And after a good hour of reinforcing, decorating, tasting icing and peppermint sticks, the house was complete. Getty did an awesome job.

Tonight we tackle decorating cookies. 🙂


On Your Mark, Get Set, Go Getty Owl Run/Walk!


From Kate:

After the first of the year, we will really be pushing our upcoming event, Getty Owl Run/Walk. But for now I wanted to explain why we decided on doing this in the first place and what we would like to get out of it. After which my hope is that you believe this is an event that you and your family would like to participate in, and hence helping Getty Owl Foundation continue the work we are doing to help spread SMA awareness, helping families affected by SMA, and even more importantly, helping fund some amazing research right now that has the potential to turn this disease around.

First things first, I love to run. Running helps clear my brain, helps me figure out next steps in what would seem an impossible task. But sure enough by the end of a run I have a plan in place. Before running I used to walk. Walk to school, walk to the store, walk to the bookstore, walk, walk, walk. And the amount of walking I did, I had a plan to end poverty, create peace in my community, etc. It is amazing what a little exertion of muscle can do for the brain and the heart.

Having said that, Takoa and I were sitting in a Starbucks last December and we were brainstorming on what we can do for our community as well as help spread SMA awareness. So a run/walk race kind of floated to the top rather quickly. Since both of us are runners it seemed only natural that we stick to what we are good at. Having said that, we went to the natural next step, ” but there are so many races in Sacramento, how do we make this run distinct enough for people to come, enjoy themselves and really make a commitment to participate”? Our solution was give the community incentives for participating.

We first decided on working with the best of the best. Capital Road Race Management is a class act. We knew that our event would be well organized, we knew that their commitment to our community was respected and sought after. Every year they help manage, Run To Feed the Hungry that registers tens of thousands of elite runners, families, first time runners/walkers and everywhere in between. I was absolutely humbled by their willingness to partner with Getty Owl Foundation to make this first time event a huge success and ultimately make it an annual race in Sacramento.

So next step was to find businesses that were willing to come aboard and help support our cause. I can’t tell you how amazing it feels to have such an incredible group of companies that believe in our cause and are willing to put their name behind our fight against SMA. So far this is the list of awesome companies that have committed with support. Incredibly enough, the list will just continue to grow. I am still pinching myself, this is such a blessing.

So now is the big next step, how do we get people to register?

One of my absolute favorite movies is Field of Dreams. It started with a crush with Costner and then as I grew up the symbolism of the storyline just seemed to keep resonating with me.

If Mark and I just live as an isolated family with a beautiful daughter that happens to have SMA, we would live an incredible life. But for us this disease is bigger than us, this cause is bigger than us and it never felt right to live in isolation, when we knew there was an opportunity to let our community know that this SMA diagnosis does not discriminate. We felt like we would be doing such a disservice if we remained quiet.

So in keeping with the theme of the movie, the common phrase people often hear is, “if you build it they will come”. We have created an event for any age, any gender and any ability to participate. We have chosen a time of the year for those who have their new year’s resolution is to get in shape. February is a perfect time to make healthy decisions in life. The Getty Owl Run/Walk is the last race before the annual Shamrock Half-Marathon, for those that need one more long run in before March. The route itself is a breathtaking route down the Sacramento Waterfront. We have created a wonderful post-race family festival that includes activities for kids as well as adults. Food, vendors, giveaways, music, crafts are just a few of the awesome aspects of the festival. And in the process what you as a participate will be doing is helping us, Getty Owl Foundation continue our mission and reach our goals to fight SMA.

So on February 26, 2012 at Crocker Park we will hold the first of many Getty Owl Run/Walk. The 1/4 mile kids run will be escorted by both the Sacramento River Cats and California Family Fitness mascots. The 5k and 10k will be serenaded by several bands to keep you motivated en route. Lots of food and drinks will be awaiting your arrival at the finish line.

So the Getty Owl Run/Walk has been built with great care and detail. And now this is your chance to support and participate.

If you have ever wondered how you can help our cause, register and participate.

If you have ever wondered how you can help Mark, Getty or I continue to help find a cure for Getty and all of her SMA friends, register and participate.

If you have been reluctant to outreach to our family for whatever reason, here is your chance, register and participate.

Tell your friends and family that the last Sunday in February can make all the difference for not only our family, but for thousands of families both with SMA children and for families that will have SMA children in the future, since there is no cure ……….yet.

If you would like to learn more about the Getty Owl Run/Walk go here.

If you would like to register for the Getty Owl Run/Walk go here.

If you want to follow on facebook for updates on the Getty Owl Run/Walk go here.


On behalf of our family and the Getty Owl Foundation, thank you! We hope to see you there and we hope you have a great time.