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Being Present

From Kate:

Being present certainly is easy to keep in mind and it is certainly easy to say, but how does one truly stay present? So many things to dwell on yet, so many great memories to be chained to in the past. So many things to look forward to in the future yet, so many scary things that could be lurking in the future. Life can be very unsettling at times and I find myself in places unknown to my heart that just hurt. Simple as that.

I have had to throw out expectations, controlling behaviors, and truly anything I thought I had the least bit of power over in the past  six years. What I know I have control over is to make Getty’s life awesome. Otherwise, the rest is not in my control. We have built a strong fortress of love, special diet, life-saving machines, knowledge, education, socialization, magical moments, milestones, you name it. We have been able to rethink what compromise looks like, what love looks like, what devotion looks like. We would not have been able to accomplish any of this without being present. It has not happened overnight, but years of work. It is not perfect, nothing will ever be prefect.

Being present is a choice. Making a concerted effort to feel, to breathe, and be in the moment. I know I can’t change the past. I have an immense amount of overflowing hope for the future, but I can’t will it. What I do have is this moment and only this moment. Tickling and hearing Getty’s laugh. Watching Getty’s relationships grow and blossom. The sweet way Getty smiles and rolls her eyes at the same time. How she has really started to embrace Christmas spirit. Really, it is just the abundance of presents accumulating under the tree for her. The variations of verbal coos that ALL mean something different. The beautiful sound of her sweet voice singing songs. How she taps my hand with her little fingers. Sometimes it is tapping to a song and sometimes it truly is a beautiful show of love, her way of letting me know she is near me.

Every day brings something slightly something new. I truly believe if I were not embracing the moment I would not see and feel all of what Getty contributes on a daily basis. I would be overwhelmed with the care of Getty and I would miss out on the abundance of what she offers to all of us.

Caring for Getty is 100%, all the time. It simply has to be. SMA is relentless and is overwhelming and it doesn’t sleep. I have to be on my A game all the time. I am exhausted, I am unshowered, I am depleted. But I keep fighting. I am her mother, it is my pleasure. We all make decisions as parents. I have made a million mistakes and will continue, but my love and presentness is unwavering. It is a choice. I made a decision a long time ago, when Getty was first diagnosed that I would not regret. That has carried me through some very scary times but it serves as a place of comfort at the same time.

I don’t claim to have the magic equation for fulfillment. I have no idea what that looks like for anyone else but myself as Getty’s mommy. But what I do know is that once I made a decision to just be, it became so.

We were blessed last week to go see the Nutcracker for the 3rd year in a row. It is our beloved annual tradition. Getty loves movement and music. The Nutcracker fits that bill every year. It was a magical night. She knows most of the tunes and I gleefully listened to her sweet voice as she hummed notes throughout the performance as well as her finger tapping to the beat.

Happy Holidays to all. May you have a moment to breathe and take in the love of your family, celebrating the moment, and having the ability to show your love to those around you.



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5th Anniversary Getty Owl Run/Walk Registration is Open!

From Kate:

It is that time of the year again, we are so jazzed to announce our 5th Anniversary Getty Owl Run/Walk registration is open!

I cannot yell from the rooftops loud enough!!! We are so excited and just so thankful that we have had the capacity to organize and produce this event on behalf of Getty Owl Foundation. We certainly are excited about this being our anniversary year. This year is extra special for us because we get a real chance to take pause (even during the craziness of planning a run :)) to reflect on how far we have come.

When Mark and I set out to create Getty Owl Foundation, we weren’t quite sure who would care. I mean honestly, if you think about it, here we were a new family fighting for our daughter’s life on a daily basis, would there be time to do both? When we were creating the foundation we had our reservations. Would we be able to balance taking care of Getty, give her everything she needed to live a fulfilled, happy, and healthy life while also helping our SMA community and help our greater Sacramento community understand how important it was to understand what SMA was and how we needed to band together to fight this disease as a community? The answer was yes, yes, and yes!

I will be honest, it has been hard, but it has NOT been impossible. We have been very proud of our efforts in raising SMA awareness and helping families fight SMA for their children. I can’t tell you how rewarding it has been as a mother to help other parents fight for their child’s health. It has also been rewarding to have conversations with all kinds of people that want to help advocate and want to help spread the word about SMA. This journey as a family and as a foundation has been one of beauty and fortitude.

As I sit writing this post, my mind is taking inventory of all of the simply amazing individuals, families, and companies that have and continue to help us reach our potential as a foundation. Making connections with people from all over the world who just want to help lend a hand in any way they can has been a priceless experience. Thank you to every single person that has helped Getty Owl Foundation become what it is today.

What I do know is that we are making a difference spreading SMA awareness. We are making a difference for families affected by SMA. We are helping to provide needed funds to help further research to one day find a cure for SMA.

That makes our hearts happy and it helps us realize that this fight to end Spinal Muscular Atrophy has and will continue to be worth it. Getty and all of her friends will always be worth the fight. Always!!!

So in the spirit of reflection and celebration, we are so honored to present our 5th Anniversary Getty Owl Run/Walk! Maybe jazzed is not the correct word. We are ELATED to put on our 5th Anniversary Run/Walk!!!!

Getty Owl Run:Walk Postcard


Sunday, February 28, 2016

Full race information click HERE!

We are so excited to announce and offer to every registered entry a Commemorative Participation Medal. This truly is our way of thanking everyone for their continued support of Getty Owl Foundation. With your support we have been able to raise over $150,000 in the past four years.

For those that come year after year, we thank you for your loyal support and ask that you come this year and help us celebrate. You have all given Getty Owl Foundation the opportunity to make this event not only special for us, but for our greater Sacramento community. Bring your family, friends, co-workers, classmates, and help make this a day to truly remember.

For those that have not participated and are thinking about it, let me give you an idea of what you can expect to experience.

Getty Owl Run/Walk has always been a day to celebrate family and friends. Our 1/4 mile kids run is fun for not only our kiddos, but also for the parents to see them fly with the greatest of ease. We give away prizes at the beginning of the race that seems to always be popular. This year in particular will be pretty cool. In years past we have given participation ribbons to all of our races :). This year we have medals in addition to our event t-shirt for all kids. Dinger will be in attendance to support and entertain the crowd.

Our 5k and 10k and routes hug the beautiful Sacramento River along the parkway. The routes complement a wide range of abilities. From elite runners to weekend strollers, this race is for you.

Post-race family festival incorporates music, vendor booths, and food. We throw a little party after everyone has given it their best. 🙂

Registration includes a goody bag, event tech shirt, and this year a commemorative participation medal.

If you would like to participate, but cannot physically be in attendance, we have the option of becoming a Virtual Runner.We will send you all of the perks of physically being there. It is kind of cool. You can run a 5k in Minnesota to support us and get an event shirt, bib, and medal. 🙂

If you or a company you know would like to participate in becoming a sponsor of our event, here is our KIT!


We hope you can join us on February 28th.

We thank you in advance for your continued support of Getty Owl Foundation.

We thank you for banding with us for the past 5 years in our fight to end SMA.

Thank you for giving us the ability to put on such a special day for the last four years. Let’s make our 5th the best ever!!!!!









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Dutch Bros. Has Done IT Again!!!!!





From Kate:

It is with great pleasure that I update everyone on the amazing result of the Buck for Kids program offered by Dutch. Bros. Coffee this past Friday.

With the help of patrons like you, Dutch Bros. raised $4,085 for Getty Owl Foundation!!!!!

We cannot thank you enough. We are so thankful for the support! This helps us continue to help families affected by Spinal Muscular Atrophy. 

GOF Buck For Kids


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Dutch Bros.’s Buck for Kids, Tomorrow (Friday 4th)

From Kate,

I cannot begin to articulate how incredible Dutch Bros. has been to Getty Owl Foundation. Franchised owners, the Grubb Family has taken it upon themselves to host Buck for Kids for the past two years with a dollar from every drink to be donated to Getty Owl Foundation. We cannot thank them enough and we are also very aware of how much they do for our city’s community. They support schools, they support families that have lost loved ones in the line of duty, they support children with cancer, and the list goes on. Their hearts are always in the right place, a place of love and kindness.

Tomorrow, Friday the 4th at these three locations:

5289 Auburn Blvd Sacramento 95841
7445 Madison Ave Citrus Heights, 95610
8552 Madison Ave. Fair Oaks, 95628

Buy a drink to help support our fight against Spinal Muscular Atrophy, the #1 genetic killer of young children. Thank you to the Grubb family, thank you to Dutch Bros., thank you to everyone that stops by and buys a drink. While you are at it, please tell those amazing employees at Dutch Bros. that they are making a difference.


GOF Buck For Kids

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