Tomorrow marks a very important and special day for Getty and our entire family. March 21st will be the beginning of a new chapter in her life. Tomorrow Getty will be getting her first treatment of Spinraza. On December 23, 2016, Biogen’s groundbreaking medicine called Spinraza was approved by the FDA. Since approval we have been discussing next steps with her doctors. We have been very impatiently waiting, as you might have guessed.
We have been waiting for something, anything, since July 30, 2010. It has been roughly, 2,340 days since Getty’s diagnosis. Being told your child would not make it to see their second birthday was a hit to the gut, head, heart, and soul. Looking into Getty’s blue eyes and being told that our time is limited just didn’t make sense. Looking back on that day, sitting together in silence not knowing what to think or how to even wrap our head around what our sweet Getty has possibly been dealt, when we just needed to look into her eyes and follow her lead. She has always been steering this ship. Getty has always been present in her wishes to blow life out of the water, every step of the way. She inspires all that meet her. She brings laughter and smiles to everyone. Getty is a powerful force that makes you just want to be good, bring good to others, and feel content in what life has to offer.
We are in a new chapter of life. We started out life without SMA, then with SMA, and now a new chapter that comes with a medicine to help Getty continue gallantly fighting SMA. We are just so thankful and incredibly mindful of what gift has been bestowed to Getty.
I made this video for Getty the day the FDA approved Spinraza. I was so overwhelmed with emotions on that day, let’s be honest, I have been an absolute wreck since. ;). To realize that in her lifetime there could be something to help support in her fight to live, was really too much to handle. So instead of processing it, I made a video.
This is what Getty decided to do after she was diagnosed with Spinal Muscular Atrophy…………….she decided to live and we decided to follow her lead.
We are so excited to announce our new 4 recipients of an iPad Mini. Thank you to the SMA community for supporting our foundation with your participation. While technology covers a vast spectrum, Apple’s iPad has really done a great job of creating a bridge to communication, socialization, and education for so many children and adults with Spinal Muscular Atrophy. Getty Owl Foundation is committed to giving as many people with SMA the ability to soar with technology.
We have witnessed first hand the remarkable opportunities Apple’s iPad has given to Getty. She can participate in recess play and visit family during the winter months with FaceTime. Math and spelling apps give Getty the ability enjoy learning and pushing herself to new heights. Watching and listening to audiobooks allow her to acquire language and develop her ability to imagine. Whiteboard apps, give her time to review and spell words. There really is an app for anything she needs.
Congratulations to our newest 4 recipients. Enjoy and soar to new heights. 🙂
20 years old
14 years old
1 year old
Our hearts are full and we are just so humbled by the support this morning at our 6th Annual Getty Owl Run/Walk. Thank you for supporting our annual event. It is a labor of love and I am so thankful to be able to put on an event that brings people together as a community for 4 hours. 🙂 Today was absolutely beautiful, the weather could not have been more amazing, and the crowd was energized!
Getty was able to come, which made for an even better day. Getty and Mark flew through the course with great freedom. To see her light up and squeal was so special. Giving her the ability to have such a special day created around her makes all the work and organizing so worth it. All of it.
The support of today gave us the ability to raise over $37,000. Funds raised will give us the chance to support more families affected by SMA.
This past holiday season, we were able to gift iPads to children with SMA. We are committed to getting technology into the hands of children that need special means to communicate, learn, and express their needs. Funds raised will help support our commitment to the SMA community.
Providing supplies and medical equipment is also a commitment to the SMA community. We will continue to find ways to narrow the gap between needs and solutions.
In order to support families, Getty Owl Foundation depends upon community support. This year has been simply breathtaking. We would like to thank the following companies for their commitment.
Thank you to:
All three companies continue to show their commitment to not only to Getty Owl Foundation, but they also work tirelessly with many non-profits in the community. You are all making a difference for so many.
We hope you had a great time. We hope you felt the love. We hope you come back and join us again next year. Sunday, February 25th to be exact.
So here is to today, CHEERS!
For those looking for race results, CLICK HERE to see your race time.
Hey kiddos are you awesome? Come out to our 6th Annual Getty Owl Run/Walk and show us!
Join Dinger, Captain Fitness, and Herky and fellow awesome kids in our 1/4 mile kids run!
Registration for 1/4 mile kids run is $15 and includes a race ribbon, tech event shirt, bib, and goody bag.
We will also be doing giveaways of some great stuff from:
Sacramento River Cats
Sacramento Children’s Museum
Grand Prize: A cool bike. Yep, it is pretty cool!
After the run hang out for a bit. Get your face painted, eat a waffle, and enjoy some tunes!
See you Sunday!
Countdown is officially here! Sunday we will be celebrating our 6th year of fighting SMA! So much has happened in these past years. We have met some incredible people, organizations, and companies that understand how important it is to fight on a united front. It is not hard to have passion to fight this horrible disorder. Passion, determination, and resolve are all very easy to pull from within. To raise funds to help families affected for Spinal Muscular Atrophy is difficult. Our annual Getty Owl Run/Walk has given Getty Owl Foundation a platform to spread SMA awareness and to raise needed funds to support families affected by SMA, as well as raising funds for research to one day help find a cure.
Please consider joining us for a great community event. Our 1/4 mile kids run is always a favorite of our little ones. Running with Dinger (Rivercats), Herky (CSUS), and Captain Fitness (California Family Fitness) bring a fun and competitive nature to our younger generation. 🙂
5k and 10k is an awesome route along the Sacramento River. This year in particular, it will be a great view of how much water we have accumulated in the past weeks of torrential rain. Much needed in our region for sure.
Post-race festival will be a great time as well. Awards will be given to all age group winners as well as overall winners. Over 30 vendors, including coffee provided by Maui Wowie, and some amazing waffles, provided by Frenchy’s Waffles. Facepainting as well as a balloon maker will be complementarily on hand. Last but not least by any stretch of the imagination is our beloved DJ ZROKK. It is always a fun time and I hope you can join us.
We continue to have a great outpouring of support on a virtual level. Thanks to everyone who has registered as a virtual runner/walker all over the USA. There is still time to become a virtual runner/walker as well.
There is still plenty of time to register.
See you soon!!!!!!