Getty Owl Foundation

5

From Kate:

It is with great pleasure to announce that our little lady is now 5 years old. Typing that number makes my heart burst with happiness. This past year has been so wonderful to watch Getty continue to grow in all kinds of ways. She has hit some incredible milestones and we are just so grateful that we have our lady by our side as she continues to teach us the gift of life.

-Lost four teeth. Four bottom teeth have proven fruitful from the toothfairy. She is very giving and Getty now has an abundance of Legos.

-Pre-school is going great. She is excited every morning to get ready for school. She takes delight in communicating with her classmates. The kids have taken her under their wing and have been so wonderful including her in their activities and lessons. Her teachers are awesome as well. We have really been fortunate to have some really amazing professionals helping Getty achieve her goals.

-Getty’s village has grown. We are all so thankful to those that have graced Getty’s life. We seem to always have a full house with all kinds of individuals that are caring, giving, and most of all, love Getty as their own. This year in particular seems to have been the most important. As Getty gets older, she has different needs, some that Mark nor I can do for her and we have thankfully found amazing people that seem to fit those needs.

-Getty’s health has remained stable. Sometimes I get nervous writing this in the slim change that I am jinxing this, but Getty has been a beast of a fighter and has been well throughout this past year. We clearly understand how fortunate we are to have a healthy little lady and we are just sooooooooooo thankful. And actually, thankful is an understatement. We know how quickly life can change and to have this past year with no instances has been a huge blessing.

Here are some fun things Getty did this past year:

-Went on a Girls Trip to the beach.

-Went to the Music Circus to see Mary Poppins.

-Visited Apple Hill.

-Went on many lunches with the girls and a few daddy dates.

-Moved to a new home. One with ample space and accessibility for her.

-Continued to practice in her powerchair.

-Communicating effectively on her Tobii eyegaze.

-Growing leaps and bounds.

-Has endured two uneven haircuts by her mother. 🙂

-Enjoyed a visit to the firehouse.

-Long walks around the neighborhood.

-Ran with daddy at the 4th Annual Getty Owl Run/Walk.

-Became the mother of three fish: Jacque, Gill, and Marlin.

-Went to an awesome light show over Christmas break.

-Loving listening to chapter books.

-Wrote her own name with the help of a bit of tape and mom’s hand to brace her wrist.

-Went to see the Nutcracker for the second time.

-Went to a movie theater for the second time to see Cinderella.

-Continues to laugh, love, and live life without abandonment.

-Oh and one other important thing……..Getty has learned how to scowl. Not sure who she got that from. 🙂

This year has been full of beautiful memories. Now on to another great year. We are so excited to see what it will bring.

Happy Birthday to our little lady.

4th Annual Getty Owl Run/Walk to End Spinal Muscular Atrophy – Such a Perfect Day!

SUCH A PERFECT DAY

The people were perfect.

The atmosphere was perfect.

The weather was perfect.

Everything was perfect.

This is our 4th year hosting the Getty Owl Run/Walk, and it just keeps getting better. People from all over the Sacramento, relatives from Mt. Shasta, wonderful friends from the Bay Area, other SMA families, people from far and wide and literally around the world all rallied themselves in the spirit of giving to participate in the event in various ways in support of our cause: Helping families. Fighting SMA.

We were amazed to receive news that the first person to complete the run that day did so in Japan! People were finishing the run before we were even awaken Sacramento.

SMA stands for Spinal Muscular Atrophy… the #1 genetic killer of young children. It’s the #1 disorder people have never heard of. We hope to change that through this event, and all our efforts at Getty Owl Foundation.

Each year, the attendance grows. We love seeing so many of the same faces at the event and love seeing so many more from year to year. It tells us people care. It tells us people want to not only learn about SMA and look into SMA carrier testing, but they also want to give of themselves to see the end of SMA and take part in improving the lives of so many kids, like Getty, who cannot help themselves.

We were blessed by nature on the day of the run, as the skies were clear and the sun brought warmth, which was really nothing compared to the warmth brought by the Sacramento community, the many Getty Owl Runners and Walkers, Reagan’s Warriors, other SMA Warriors, event sponsors, booth vendors, Rich Hannah with Capital Road Race Management, Sacramento Police Department, and so many other who make this event a success and glowing testament to human generosity and kindness.

We give a hearty thank you to all participants and sponsors. We have listed them all before, but we give social thanks again to the Platinum Sponsors here: California Family Fitness, Raley’s, and Dutch Bros.!

A very special shout out goes to Sacramento County Supervisor Patrick Kennedy for kicking off the event with gusto. Patrick has been a huge supporter of Getty Owl Foundation, and he considers Getty his hero. He generously presented us with a Sacramento County proclamation honoring the event and Getty Owl Foundation. Thank you, Patrick and Sacramento County!

This year’s event was especially memorable in this this is the first year Getty participated in the run (with a little pushing by Mark). They ran the 5k together, and Getty hooted with delight much of the way along the Sacramento River.

KCRA 3 News covered the event, running multiple fantastic stories on the Sacramento evening news, raising SMA awareness on a much broader scale. KCRA has covered the event every year. Thank you, KCRA!

Thanks to all who participated, sponsored, attended, and otherwise made this event such a success. In all, about 1,000 runners and walkers participated and the event generated about $45,000 to raise SMA awareness, help affected families get necessary medical equipment and supplies, and fund research for a cure!

THANK YOU!





Let The Countdown Begin!

From Kate:

Well we are in the homestretch.

We are ready for a beautiful day (no rain in sight).

We are ready for a memorable day.

We are ready to raise SMA awareness.

We are ready to give out awards.

We are ready to entertain and welcome.

We are ready for you.

Our goal is to hit 2,000 runners/walkers. I’ll be honest…..we are not very close to our goal and we are hoping to make one last outreach to ask for your help.

Would you consider bringing your family to an awesome family oriented run this Sunday, February 22nd?

Would you consider virtually participating?

Would you consider walking or running your heart out for those that can’t (yet) walk or run?

Would all reading this consider helping us push for our goal so we can help end SMA?

Click HERE for all the information you will need to sign up and learn more about Spinal Muscular Atrophy.

Let’s do this together. Let’s fight this disease one step at a time.

We thank you all in advance for your support and willingness to help Getty Owl Foundation be a part of the solution in the fight against SMA.

Sincerely,

Kate Mathany

Getty’s proud mama 🙂

4th Annual Getty Owl Run/Walk

From Kate:

Well it is that time of year again. Getty Owl Foundation has had the distinct privilege and honor to host an annual run/walk for the last 3 years and here we are again going into our 4th! We are so excited and so overcome with happiness. Thank you to all of the participants who have supported us in years past. We appreciate it and we dependent on it.

February 22, 2015 at Crocker Park in Sacramento, California, we will be honoring all warriors and angels with Spinal Muscular Atrophy. We will be raising awareness about SMA. We will be raising funds to help families affected by SMA. We will be raising funds for needed research to fight and end SMA.

Will you join us? Will you help us fight SMA?

Last year we hit our goal of 1,200 runners and walkers. This year we want to go BIG! Our goal is 2,000 and we will not stop until we get it!

We thank you in advance and we promise that our run/walk will not disappoint. You will have a great time and you will be helping a worthy cause.

Last year we added a virtual option to our registration. We had over 100 runners around the nation in support of Getty Owl Foundation and our 3rd Annual Getty Owl Run/Walk. It was an awesome feeling knowing that they were out there in support, even though they could not physically be in attendance. Perhaps someone reading would be interested in being a new member of our virtual Team Getty. 🙂

So let me give you the scoop:

Click HERE for race information!

Click HERE to register!

Click HERE to see all of the super awesome sponsors that are supporting us and that we certainly could not do without!

Click HERE to check out what vendors will be at our post-race family festival.

A Selfless Gift

From Kate:

It is a very tricky subject to approach your parents to take an SMA carrier test. On one hand there is an extremely emotional aspect to it. Part of me wanted to not ask my parents to do the test. I thought, “what is done is done, why put them through this?” My original thought was that since Getty had SMA, the likelihood of another family member having a child with SMA is slim to none. I didn’t want either of my parents to feel the burden of knowing that they had in fact passed down the SMA carrier gene down to me. I didn’t want them to feel an sense of discomfort. All I knew at the point Getty was diagnosed was that Mark and I were both carriers and WE were the ones that transferred SMA to her. It was on us.

Then I started to read more. I started to really understand the situation and it became very clear to me that I was going to ask one of my parents to take the carrier test. There was something in me that was leaving the emotional attachment and thinking more logically and practically. I do care if this gene delineation passes along throughout my family line. I do want to know whether it came from my father’s line or my mother’s. Why you may ask? Because of this.

I would like to thank Jadon’s Hope Foundation and B4SMA Productions for creating this awesome statistic chart. It hit me like a ton of bricks.

If you have a parent who is a carrier, you have a 1 in 2 chance of being a carrier.

If you have a brother or sister who is a carrier, you have a 1 in 2 chance of being a carrier.

If you have a niece or nephew who is a carrier, you have a 1 in 4 chance of being a carrier.

If you have an aunt or uncle who is a carrier, you have a 1 in 4 chance of being a carrier.

If you have a first cousin who is a carrier, you have a 1 in 8 chance of being a carrier.

I would greatly appreciate if everyone reading this blog post could take a second to let this all sink in. I am not only speaking to my entire family, I am speaking to the world at large. Spinal Muscular Atrophy not only affects our family, but it has the potential to affect anyone’s family.

Here are the facts of my side of the family:

-Either my father or my mother passed the carrier gene down to me.

-Or they are both carriers and had a 1 in 4 chance of having a child with SMA and my brother and I were not affected, but I am a carrier and the likelihood of my brother being a carrier is 1 in 2 chance.

-There is no prior history in my family with SMA.

-My great-great grandmother had 12 kids, only one survived infancy.

So that is what I know. Little to no history to grab from and say beyond a shadow of a doubt, “yes that is where the SMA came from”. Perhaps some other people might be in the same boat.

1 in 40 people are carriers. That is a fact! SMA does not care what nationality you are, what race or gender. It simply seeps into your family genetics and pops up at will.

I got a chance to meet some incredible people a few months ago that run a organization called JScreen. They focus on genetic testing and then they take to another level. I can’t tell you how often we get emails that simply ask us (Getty Owl Foundation), “how do I get tested?” “I don’t know where to start.” I hope this is not sounding like a sales pitch, but JScreen is where I send people now. They do everything for you, except for the actual saliva specimen for the test. 🙂

Last week I went on their website and requested a carrier test for my dad. They asked some medical questions, you pay a small fee, they get in touch with your doctor and the test is sent to your home. Done and done!

We find out next week whether my dad is the SMA carrier. If he is not, then it would be my mom. Regardless of who it is, what we will now have is a wealth of information for my immediate family as well as my extended family. I am so proud of my dad. He is such a special person in my life and for him to selflessly take the test for me was such a wonderful gift.