Getty Owl Foundation

Here Comes Getty Mama! Who Will Join Me at the SF Marathon?

From  Kate:

Running has always been a good outlet for me. Running is not easy, but it does kind of shake up the bad stuff in my head that often takes over after days, weeks, and months inside our house. With RSV and flu season almost over, I am so excited to get out more and dust off my running shoes.

This past month Getty Owl Foundation was absolutely humbled with being chosen as an official charity partner of the SF Marathon. I was speechless when we got the news and it still gives me the warm and fuzzies. The last time I got to run for Getty was in December. My first marathon and Getty carried me the entire way. This was one of the most important days in my life. Getty was waiting for me at the finish line.

It is simply amazing how her voice and love can carry this almost 38 year old over the finish line. But I did it, it felt wonderful and I am about to do it again in July.

After the marathon, I did what any non-marathon runner would do, I injured myself pretty good. The lack of training in the final month leading up to the marathon (caring for Getty) gave me a false sense of security. I was going to complete the run, but I was not sure how happy my body was going to be. Turns out it was pretty upset. One of my knees went out and I have slowly been working to get better and stronger. It seems as though opportunities come in different shapes and sizes. I was seriously considering stopping for the year. Just to give my body and really my knee a break. Then we got the call from the SF Marathon and I feel like it was a call to action to spread SMA awareness locally and nationally.

Just think of how many people will see the words, Spinal Muscular Atrophy. Just think of how many more people will be in some way shape or form, become educated about the #1 genetic killer of young children. Just think of the possibilities. I do every day and THIS could be a chance in a lifetime to make a mark on this disease. I don’t want SMA to hide. I don’t want another family to be told that their child has SMA. I also do not want newly diagnosed to feel left vacant inside not having heard of this horrible disease before. I want people to be educated and informed. I hope our foundation’s presence will spark conversations, questions, and goggling. 🙂

I also feel like it was a call to action to gather everyone I can to register as a member of TEAM GETTY. I love the feeling of camaraderie and this is a terrific chance to be with friends and meet new ones.

Originally I was going to train for the marathon, but that would be ridiculous now. Also, I would like to secure the feeling in my knees during the duration of my life 🙂 and so I will be doing the beautiful 1st half marathon. The first portion routes across the Golden Gate Bridge. It feels like a bucket lister to me. So I am excited to adorn the TEAM GETTY shirt and run across the bridge for my babe again.

We have several team members already signed up. I want to thank those crazies/pirates in advance. We have a great mix of marathon and half marathon runners.

I would love to add to our team. There is still tons of time to sign up. If you or know someone interested in participating, please send them over so I can give all the details.

Here are some details for those interested:

Date: July 27th, 2014

Where: San Francisco, California

Distance: Half Marathon and Marathon 

Price: Marathon $165

           Half Marathon $120 

Registration: Is through Getty Owl Foundation,  NOT the official SF Marathon website. So please call us at 916-476-3977 or email us at hoot@gettyowl.org 

What to wear?: TEAM GETTY tech shirts are complimentary to all team members and they are RAD! 

Scentsy Party This Month!

From Kate:

I would like to thank our friend Bren for putting on a Scentsy party for Getty Owl Foundation for this month.

20% of all orders will be donated to Getty Owl Foundation.

Bren, you are awesome and so kind.

Thank you.

I want to thank everyone in advance for their support. I just put an order in for our home. The house will be smelling like the sweet smell of lemon very soon. I cannot wait.

Here is the link to order for the month of April. https://brendabarberena.scentsy.us/Scentsy/Home?partyId=233416810

GOF is an Official Charity Partner of the San Francisco Marathon!!!!!

From Kate:

We have some incredible news!!!!

The San Francisco Marathon has chosen Getty Owl Foundation as their OFFICIAL Charity Partner of the San Francisco Marathon. 

We are beside ourselves excited by the opportunity and so thankful to the committee for choosing us as their charity. The opportunity to spread SMA awareness on a national level has always been one of our paramount goals as a foundation…..and here we are. Awesome!!!!

The San Francisco Marathon is one of the biggest and most widely publicized marathons in the United States. To know for a fact that Spinal Muscular Atrophy will be made known, spoken about, and spark curiosity are all incredible opportunities for the SMA community and the medical field in general.

Will this opportunity start a conversation? We know so. Will this opportunity help break the mystique of SMA?  We know so. Will this opportunity help raise funds to continued research and helping families? We know so.

So what does this ultimately mean? 

Getty Owl Foundation and vital information about SMA will get into the hands of the thousands of registered participants and spectators.

Details, Details, Details!!!

SF Marathon is July 27th, 2014. Click HERE for all of the marathon details. One aspect of the race is that they offer not only the marathon, but they also have two half marathons and if you are feeling ambitious, a 54.2 mile run as well.

TEAM GETTY

We have started a TEAM GETTY squad for the race. We are currently looking for marathon and half marathon runners to join our team. If you are interested, please email us at hoot@gettyowl.org or call us at 916-476-3799.

If you are interested there is a special way to register, so please do not register online through the SF marathon website.

One great perk for signing up as a TEAM GETTY runner is that you get priority registration. This race fills quickly. As the official charity, we get priority.

Complimentary TEAM GETTY tech shirts to all team members.

If you or you have friends interested in being a part of our team, please pass along the great word.

Help us raise $10,000 to help meet our goal. Go to Getty Owl Foundation’s Crowdrise Page  and donate whatever you can. We appreciate any and all donations. All money raised is earmarked for research. We are an ALL volunteer foundation. We love what we do and we know we are making a difference. We thank you in advance for your generosity.

Here is to 4!

From your parents,

This day holds extreme significance to both of us as your parents. I would assume the obvious to most is that you have hit a milestone that so many may take for granted. Yes it is significant that you have and will continue to grace us with your smile, your laugh, your expressive eyes, your sassy expressions and yells of happy and disapproval exclamations, but it is even more than that. We decided to write individual letters to you. While we both feel the same in so many ways, when we read these to you today, we kind of wanted to read our own to you with each of our voices, so you truly understand what today is all about. Daddy will go first.

Getty Girl,

You’re FOUR!

Happy birthday!

What does that mean?

I can’t help but pause and reflect on you, me, and our lives together.

You know, they said you wouldn’t be here today. We proved them wrong, honey. We proved them wrong and you continue to do so.

Meanwhile, I hope we, together with all your loving friends around the world, taught them a thing or two.

Yes, one of the first guttural reactions to your birthday each year is a sense of defiance and triumph. But what’s lurking below the surface? Let me tell you.

In a word, it’s … Love.

You have taught me to love like never before. It’s deep and unyielding. It drives me to breathe more deeply, sing, smile, share, care, relax, and fight.

When each day is done, I see peace in your eyes…

I hear it in your soft hoots and giggles…

I feel it in your warm soft stillness…

I sense it in your wisdom and patience…

And the deep rhythmic hum of your breath, as we drift off to sleep, reminds me to appreciate the simple facts that you are happy and you are here. That’s really all that matters.

I stay up for a little while longer just so I can watch your numbers change as you slip into slumber.

The stresses and pains of the day melt away. I am delighted to know you got to smile, laugh, and learn… and I got to share my love with you for one more day.

It’s been four years together, Getty ….

You, mom, and me.

Four years of living and loving each moment… one day at a time… and it’s been a fantastic ride.

Thank you for sharing and inspiring love. I am one lucky dude.

 Love,

Daddy

Little Lady, 

For roughly five years in total you have been a part of my life. In some ways literally. You continue to teach us how to love, how to take deep breathes, and ultimately how to live with grace. Every day you wake up it is a new adventure. The days may seem routine to some, but to us it is like getting on a space ship and letting the world offer its great rewards and we get to see where it will take us. Every single day you smile. With every single new day you grow and blossom into a little lady. What I am trying to articulate is that, me, your mom, feels like the luckiest mama in the world. Every single day, I get to have conversations with you. Every day I get to hear your beautiful voice. Every day I get to watch you roll your eyes at me for something I need to fix immediately. Every day I get to be yours and honesty Getty, that is all I want to be, yours. 

Thank you for fighting. Thank you for living life to the fullest. Thank you for teaching others what life is really about. Thank you for showing love and patience. 

At 8:16pm tonight you will officially turn 4. I remember when you came into the world like it was yesterday. Your eyes were so wise and your disposition was so calm. There was an air in the room that you created that wonderful night that still follows me. It was a sense of purpose. Getty you are here for a reason. You are a force to be reckoned with, yet you also permeate a sense of purpose to all that you meet. We are so incredibly proud of you and all of your accomplishments so far. You love school, you love books, you love music, you love driving your power chair, you love adventures, you love surprises, you love life. 

Getty you are our compass. Continue to lead us so that we can make sure you life continues to be enriched with love, light, and happiness. 

Love, 

Mom

Happy Birthday Getty!!!!!

The Many Faces of SMA

Guest Blogger Laurie Hoirup:

I have never been asked to do a guest blog before and I am quite honored to be doing so now. I was lucky enough to participate in the Getty Owl Run/Walk as a vendor and I can’t begin to stress enough how very wonderful the experience was for me.

Anyone visiting this website already knows about Getty and her diagnosis with SMA 1, along with how debilitating it can be. I’m sure you are also aware of the incredible support that surrounds her daily, from her amazing parents, family, friends and others who have been touched by their determination and strong spirit.

I’m not so sure you are aware of the spectrum of SMA… I am 57 years old, diagnosed with SMA 2 as a very young toddler and though my disability is certainly significant, it in no way is as severe as that affecting the very youngest children, diagnosed usually by the age of one.

I am for the most part rendered with quadriplegia; no use of my limbs except for my right hand, which operates my power wheelchair on a good day. I am however, blessed to be able to feel everything throughout my body, have complete bowel and bladder control, can sit upright, have some support of my head, I can hug and I can kiss.

I require full personal care for every aspect of independent living; toileting, dressing, showering, grooming, feeding, outdoor mobility, and driving. I am however, blessed with a wonderful husband, family and friends, the ability to complete my education, marry, give birth to my two amazing children, witness the birth of my grandsons, worked at a great job and write my memoir.

My breathing capacity is very limited; 23% of normal, which limits my strength and threatens my life and yet, I am blessed not requiring a full-time ventilator or oxygen, I can speak, I can chew, eat, swallow fairly well and I can share my joy of life with others.

There are also, two more stages of SMA; type 3 and type 4, each having the diagnosis coming much later in life, with considerably less effect on muscle function and ability to live life independently, for that matter, to live. They are truly blessed, especially in comparison to myself, but more so, for the huge differences from SMA 1.

The other faces of SMA are those who are not afflicted with the disability at all, but are affected in other ways, due to their love and compassion for those who are; family, friends, colleagues, doctors, nurses, teachers and the list goes on and on. As I look around me and see all who have supported me throughout my life, and then look at Getty and all those who are at her side, fighting her battle, I realize just how far and wide SMA stems.

These relationships make life worth living for however long, and though I can’t speak for those like Getty, who are probably too young to be so philosophical, I believe that to live and be loved is the real magic here and where there is SMA, there is definitely love.

Getty Owl Foundation has brought together people from all aspects of life. It has brought out the goodness in people, the willingness of others to give of themselves and the belief we can make a difference through love and hope. I was truly honored to be part of this incredible team!

————-

Laurie Hoirup is an incredible and inspirational SMA Warrior and disabilities advocate.

Please visit Laurie’s Blog here.

Please check out Laurie’s book here: I Can Dance: My Life with a Disability