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 email@example.com WE ALL HOPE TO SEE YOU THERE. PLEASE SHARE! LET’S GO HAVE ANY AWESOME TIME!
FDA Approval………Now What?
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.