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Homestretch to 6th Annual Getty Owl Run/Walk!

From Kate:

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!!!!!!

6th Annual Getty Owl Run/Walk

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Take Advantage of Today, Prices go up Sunday!

From Kate:

 

Oh boy are we getting closer! The last week before the run gets a little crazy, a good crazy. The house is layered in boxes of shirts, goody bags, giveaways, and logistical needs. Not too much space to walk around to get to one end to the other, but we make it work. I have found it helps you become very efficient. Instead of going to the kitchen several times a day, I go once and I get all I need for the morning, because I don’t know if I will be able to find the kitchen soon. 🙂 It is temporary, but also fun. 

One week away also means prices go up on registration. Today is the last day for pre-reg prices. Tomorrow they go up, so why not take care of it today and save a few bucks. 🙂 

With one week away my eyes have also been glued to the weather channel app. The rains have been an awesome change in our area and really for California in general. However I can say that I am hoping Mother Nature will “chill” for a bit, so we can have a dry event. So far she is listening, thankfully. We go rain or shine, but sometimes things are just more fun in the “shine”.  🙂 

So here we go:

Tomorrow registration prices go up! 

 

Register here today!

 

 

 

 

 

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We Are A Month Away…….Will You Join Us & Help Fight Spinal Muscular Atrophy?

From Kate:

We are ready! We are excited! We are pumped to about our upcoming 6th Annual Getty Owl Run/Walk! 

I wanted to give everyone a one stop shop for all things Getty Owl Run/Walk as I could, so here you go! 

First of all I would like to thank all of our incredible sponsors. Some have been with us since 2012 and without their support and commitment, this event would never had been able to connect and continue to make an impact in our community. The running community in Sacramento, in particular, is a very hard market to get into and then to have longevity is a whole other competitive monster. We were up for the challenge, but we truly understood that without support for area businesses and organizations, we would not be so successful. Please, do me a HUGE favor and find a way to patron any and all of these awesome sponsors! 

CHECK OUT OUR SPONSORS

I would like to thank Rich, Kellie, and their awesome staff at Capital Road Race Management

I would like to thank every single person who has and will have registered for our race! Again, without the support of our community, both locally and nationally, we would never have a platform to be able to spread SMA awareness. You give us a voice. You give us the ability to help families affected by SMA. You give us an opportunity to help fund projects to help find a cure for SMA. Thank you! Every single year I get the intimate experience of standing on a ladder and looking at a sea of runners and walkers. My heart pounds with joy and comfort. I look forward to seeing old friends and meeting new ones. 

So let’s do this! 

 

Here are some FAQs:

1) 6th Annual Getty Owl Run/Walk 

    Sunday, February 26th 

    1/4 mile kids run, 5k, and 10k

    Crocker Park, Downtown Sacramento

    7:30-11am 

2) So who can sign up?

          ANYONE and EVERYONE! 

3) What if I can’t be there physically? Can I still participate?

          -YES! We have a great “other” option for individuals that would like to participate even if you can’t join us physically. 

          – Become a Virtual Runner/Walker 

                    -You get a event tech shirt, bib, and goody bag sent to your house in plenty of time to wear on the event day. 

4) Can I have more details of the event? 

         -Sure. Here you go! DETAILS

5) Is there a Post-Race Festival? 

         -Yes! It will be awesome! LIST 

6) Will I have a good time? 

         –Ummmmmmm YES!!!!!!

 

If you have any questions or concerns, please email me at hoot@gettyowl.org 

 

WE ALL HOPE TO SEE YOU THERE. PLEASE SHARE! LET’S GO HAVE ANY AWESOME TIME! 

 

 

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FDA Approval………Now What?

From Kate: 

 

Well December 23, 2016 will go down as a pretty fascinating day. We had heard the FDA may be days away from approving Spinraza to help our kids and adults with SMA. At this point in our six and half year journey, you tend to be introduced to people, organizations, and companies that just might know just a bit more than the general public. So while we knew something grand was coming, it was a completely different feeling when the words were actually published and made public. 

Treatments don’t just “happen”. This is a big deal. A very big deal. In the words of one of Getty’s doctors, “You go through medical school realizing really quickly that treatments and cures for rare diseases just don’t happen. They just DON’T happen!” I am sure he was incredibly reassured that yes, indeed it is possible. 

There are so many aspects of this news that I think is important for the general public to understand. The SMA bubble we live in is incredibly hopeful and beyond excited about the prospects of what Spinraza can do for all of our children and adults, but there is another aspect for everyone to understand. What this medicine can and will do for newly diagnosed parents is remarkable. 

When Getty was diagnosed it felt so hollow. “Take her home and love her.” That “talk” still rings in my head and there is still such a bitterness with the plan the doctor had for Getty and for us as family. The message/prophecy the doctor told us that day, Friday, July 30, 2010 was , “you have little to no time with her, so make the best of the year, if lucky enough to, make as many memories as you can.” That was our reality and now I am just so thankful that while SMA will continue to be a diagnosis, it does not have to be an end all to anyone’s story. 

My expertise is in all things Getty. My expertise in what Spinraza does and how it affects people with SMA is reasonable at best. So, rather than stumble and mislead, this video does a really good job of simplifying the medicine and its abilities. 

CLICK HERE FOR A SPINRAZA EXPLANATION 

We are hopeful as we always have been. The idea that something incredible could be possible seems to have come to fruition. Here we are and here we go! 

Next steps for Getty: 

-Doctors have been notified. 

-We have been in contact with Biogen and have filed the necessary paperwork. 

-Keep Getty as healthy as humanly possible. 

-Waiting on next steps through her doctors and insurance coverage. 

-Try and remain calm and patient, knowing very well that this treatment could slow, if not stop the progression of degeneration. 

-Still waiting patiently. 🙂 

 

What readers can do to help: 

-Please send loving wishes to all of our SMA angel families. They need love and support with the news of this treatment just like any other SMA warrior’s family. This is a celebratory time as well as a bittersweet one.  We are all in this together and we all need to care for each other. 

 

 

 

 

 

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BREAKING NEWS! FDA Approval

From Kate:

Today is a moment so many, many, many, families have been waiting for. My mind is a bit scattered right now, but for now, this is what we know.

I wish I could describe my thoughts and feelings articulately, but I can’t so I will just get back in bed with Getty and snuggle her.

If you have a moment, please read.

“We are seriously in uncharted territory in the SMA community today. We finally have a viable treatment for SMA. This one counts folks and we are just so beside ourselves in celebration. This treatment does not discriminate. It is for all types! ALL types!!!!

http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm534611.htm

 

Our love goes out to all SMA families. Our hearts are with all angels and warriors and their families.”

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