Getty Owl Foundation

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!     

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. 

 

 

 

 

 

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.”

The Tradition Continues!

From Kate:

Ever since Getty was little, she has always enjoyed watching some form of dance. Music is also one of her favorites. It really doesn’t matter what, honestly, she enjoys the beat, the motion, and the costumes that come with any production. When she was just over two years old, I got a performance of The Nutcracker for her to watch and she was instantly glued to the screen. Her eyes jumped around with the ballet dancers and she would smile when there was an exciting change of music. As November rolled around that year, I started to ponder whether we could actually go to a performance of The Nutcracker.

We are so fortunate to have an amazing ballet here in Sacramento. The Sacramento Ballet is absolutely extraordinary. To the dancers, to the production, to the music. They do such an amazing job of putting on a top notch performance. With that said, I started to work on logistics.

Having a child with a fragile immune system, complicated needs, and an overall consumption of details, I initially was a bit worried about whether we could pull this off. After speaking with the rep on the phone (I think I took up pretty much her morning), I was convinced that we could make this work.

Our first trip was in 2013 and we have been back ever since. Actually now I think it if fair to say that we wouldn’t miss it! It is tradition!

I would like to first thank the Sacramento Ballet, the Sacramento Community Center Theater, and all of the staff that seriously help make our time so memorable.

For us, it is not just buying tickets to a ballet. It is so much more than that. It is having a safe entrance and exit for Getty if we need to make a quick getaway in case of an emergency. It is working with a staff that understands that we need a bit of flexibility by way of seating Getty just right so she can see and be comfortable. It is the seating in the first place, that allows anyone needing accessibility to have literally front row access and great visibility to see the amazing performance. There are moments when I can stand back after an experience out with Getty and say, “These people just get it!” And this is that time. Thank you all.

Getty always wears a super fancy dress. It is always a special day for her to hear all of the voices in the theater before the performance. See all of the pretty dresses so many women and children wear for the special day. The curtain and stage is immense and I know she gets a kick out of being at such a special place. My eyes are always locked on her as the curtain goes up. Her eyes show that of wonder, elation, and such intense approval of this day. It is so beautiful to watch her. She sings along in certain places and it is obvious what parts she enjoys more than others. Her heart rate jumps during certain parts as well as long squeals of approval. It is breathtaking to watch her eyes pop out of her head when the nutcracker comes to life. 🙂 The constant change of music and scenes are just so cool to her. It is so fun to watch.

Intermission is NOT so fun. She immediately cries and is pretty inconsolable. But you see, this is Getty’s world, so dancers and the orchestra are not supposed to need time to rest. 🙂 Once the curtain goes back up she immediately forgives them. 🙂

So this year was no different, Getty loved it and we will be back next year.

Traditions are awesome! 5th Anniversary coming next year. So excited!

 

iPad Recipients Announced!!!!!

From Kate:

Well it is time!

First and foremost, we would like to thank everyone for entering our giveaway. We are so thankful to have the means to hold an iPad giveaway and we hope to hold another one next holiday season. The hope is to make this a Getty Owl Foundation tradition.

So here we go. We would like to announce the 5 iPad Recipients.

Congratulations to:

Charlie Sykora

Gavin Davis

Casey O’Neill

Haley Wooding

Aurora Knowles

 

Enjoy you guys! All of our SMA warriors deserve technology such as an iPad. We hope to help get more into the hands of some incredibly deserving human beings. For now, your are our first 5! 🙂 We would love to get a picture of each of you enjoying your new iPad. When time permits, send us over a picture, we would love to share them.