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.
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.
We don’t write often about the cruel realities of SMA. It’s just too hard.
Getty, our little owl, at age 4 months, wasn’t meeting her movement milestones. She couldn’t lift her head, you see, when the books said she should.
The problem was something we saw in no book about family planning, pregnancy, or infant care. Nobody with knowledge of these things spoke to us about them before… Not one peep, until Getty’s doctor said those three dreaded words: Spinal Muscular Atrophy.
Having been told Getty would be with us no more than 2 years and there’s nothing we can do, we went online, searching through our tears for answers and hope. We found our new family: the SMA community.
The community is mainly parents of children with SMA, as most of the kids are incapable of participating in an online family. Many in the community are simply awesome and inspirational people; they fight daily for their kids, learn more about SMA than their doctors will ever know, and selflessly share their knowledge and experience with others.
One person stood out: Brianna McDanel, an SMA ambassador of sorts.
Brianna’s attention guided us gently, as a newly diagnosed family. She was patient, knowledgeable, thorough, smart, and kind. She shared her SMA knowledge and helped us tremendously to figure things out and find some direction, as we reeled in pain and confusion. Put bluntly, she was dedicating hours and hours of her own life to help Getty, a complete unseen stranger, known only to Brianna through pixels of words on a screen.
Then, we discovered something amazing about this person who gave us so much more knowledge, advice, and hope than any doctor would. Brianna was 11 years old. She has what she called SMA type 1/2, a wobbler between SMA type 1, the most severe form, and type 2. She used tech to get online and share her thoughts, even though her body couldn’t keep up with her mind.
We implemented her ideas, and those of others, fought for Getty, and found hope. Now Getty is a beautiful little girl in pre-school and tooling around with her own power wheelchair at nearly 5 years old, when her own doctors were prescribing her grave.
It is with heavy hearts that we say Brianna has left this world. She passed at age 15.
Despite her physical limitations, Brianna showed brilliance as she explained what life is like from the perspective of an SMA child. She educated and inspired her doctors and other families. She taught everyone around her what it’s really like to need mechanical cough assistance, to live on a ventilator, to be unable to scratch an itch, to be unable to verbalize exactly what hurts, to experience spinal curvature, and so much more.
She had SMA and she knew her time was much more limited than yours or mine… but she chose to spend it giving of herself to others in need.
Getty is here. She is happy. Brianna played a huge part in turning our tears to smiles and learning to enjoy and give back. Her loss, though a cruel reminder of the realities of SMA, also reminds us to live for each day, embrace your children, and give back.
We will miss you dearly, Brianna. Thank you. Our hearts go out to your family. Rest in peace.
‘Tis the season for giving! Getty Owl Foundation is proud to announce its $10,000 grant to advance Gene Therapy research for Spinal Muscular Atrophy (SMA). This year’s grant makes a total of $30,000 in grants from Getty Owl Foundation for the SMA Gene Therapy Program at Nationwide Children’s Hospital in the past 3 years!
Although SMA is the #1 genetic killer of young children, it is also the #1 disorder closest to cure of over 600 neurological disorders. This is important because it means one thing: HOPE!
The SMA Gene Therapy Program is designed to use a viral injection to replace the single missing gene that causes SMA. Gene Therapy has proven to have great potential in lab studies. The studies show Gene Therapy may be a cure for SMA. Of all the SMA research in the pipeline, the potential for Gene Therapy is exceptional.
Gene Therapy has so much promise, the FDA approved and fast-tracked a human clinical trial, which began in May 2014. Three infants have been treated in the clinical trial so far. The trial is continuing, and a second clinical trial for SMA Type 1 children is expected to begin in the first half of 2015.
Dr. Brian Kaspar, who leads the Gene Therapy Program, said, “Kindest of thanks [to Getty Owl Foundation] for a new contract for research and transitional funding for our SMA programs. I cannot thank you enough for the years of funding and support to our program… We have been making fantastic progress on developing treatments for SMA… We will utilize the funding from Getty Owl Foundation to support ongoing studies related to the systemic and [cerebral spinal fluid] delivery of our gene therapy.”
Thank you to our donors and supporters for your support, and thank you, Dr. Kaspar, for your dedication to the cause! Things are progressing nicely, but there is more work to be done.
Please consider a year-end contribution to Getty Owl Foundation. CLICK HERE.
Please join us for our Night at the Sacramento Kings on January 17, 2015. CLICK HERE.
Please register for the 4th Annual Getty Owl Run/Walk on February 22, 2015. CLICK HERE.
Learn more about Gene Therapy and the clinical trials. CLICK HERE.
Thank you and Happy New Year!
This will be Getty’s 5th holiday season. Looking back on the past gives us a chance to give pause for a moment to relish in the memories and milestones that our little lady continues to accomplish. As many other kids, Getty didn’t quite get the concept of Christmas and the whole Santa thing. Well she gets it now. Wrapped presents under the tree is very enticing for her now. I think she believes all of the presents are for her and I would have to say at this point, she is right. She understands the tree and how we need to decorate it. This year it was obvious that our tree has become an owl tree. I never knew there were so many owl ornaments that you could actually decorate an entire tree with just owls, but I am here to tell you that you too can. She understands family. She understands how much we all love and adore her. She understands that the world literally revolves around her and she takes that knowledge with such humbleness and grace.
She is our present. We just got to open that package early on March 25th, 2010. Ever since her birth she has been an absolute joy to be in the company of. Getty is an exquisite child that loves, teaches, and pushes us all to be better people. Her eyes show such a wise disposition. Although there are times that she uses her hierarchy to get her way, ultimately she communicates her love in such special ways to all of us. We all have important roles in Getty life. As caretakers, as mama and daddy, as grammie and Papa, as Miss Angie, as Aunt Patti, as big sissy Morgan and all of her friends and teachers. Her distant grandparents, uncles and aunts and cousins. We ALL play an extraordinary part in the growth of Getty.
I say it time and time again. Getty is gift. She is such a special child that we all honor every day. No passing moment goes unnoticed. She surprises us everyday with something new. It is almost as though she has her bag of tricks and she slowly brings them out when we need them. A week ago we were listening to the song Noel. Well guess who busted out singing it? Not a dry eye in the room. Such a sweet little voice murmuring the tune and she was trying so hard to push out the notes with her little belly.
So here we are on Christmas Eve. Our hope is that everyone has a chance to slow down and just enjoy the company of family and friends. No gift is more dear than a loved one. Hold them close and give a whisper of love. Here is to an already beautiful holiday season. Cheers!