Getty Owl Foundation

Memorial Day

From Mark:

We always honor SMA warriors: children, families, friends, and allies determined to fight spinal muscular atrophy, the #1 generic killer of young children. They soldier daily to provide a quality of life that would be impossible otherwise. Sadly, far too many SMA warriors fall and suffer years of potential life lost.

Today, we honor fallen soldiers who paid the ultimate sacrifice to defend our nation and help bring about a more perfect union. They pledged their lives, fortunes, and sacred honor to deliver liberty and prosperity to our land.

Through their loss, society as a whole gains. People advance themselves, their families, their careers, and the lives of others in peace thanks to the soldiers enabling it all.

In our world, Getty and other SMA families have their immediate medical and nutritional needs met through medical advances in clinical care as scientists toil for a viable SMA treatment or cure. We thank them for their work and sacrifices and the more fundamental work and sacrifices of the soldiers who created the environment in which these advances can occur.

We also pay special homage to Getty’s cousin Travis Woods, who paid the ultimate sacrifice in this cause. We love and miss Travis dearly and know he would be just as proud of Getty as we are of him. He is our special hero.

We remember. Thank you.

SF Marathon is 95% full, but there is still time to sign up to be a TEAM GETTY Runner!

From Kate:

I just got notified by the SF Marathon that the registration of the race is 95% full. However for anyone interested in being a part of our TEAM GETTY runners, you are in luck! We have some space left for you.

Here are all the details:

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! 

So if you are interested or you know someone interested, spread the good word. Our team is getting bigger as the days get closer to race day. It feels great to know we will have some great Getty Owl Foundation presence on race day. I cannot wait to be a part of this great day.

Happy Mother’s Day

From Mark:

I want to give a shout out to all moms. You care for, love, and protect your little ones with all your hearts.

I give a hearty shout out to all moms of special needs kiddos and especially SMA moms. You are loving warriors, tender and caring toward your babies and mama bears to anyone who dares come between your child and his or her needs.

We try to give people here a little window into this life. There’s no shortage of hardships and sweet victories along the way. The things shared here are snapshots though. They are telling, but so much of what it means to be an SMA mom can never be adequately relayed.

The depth and breadth of love SMA moms breathe into our kiddos is stunning and immeasurable. The amount of will and fight of SMA moms knows no bounds when such a medically fragile child depends on you for just about EVERYTHING.

SMA dads are awesome as well, but the bond of SMA mom and kiddo is somehow uniquely magic.

I offer big hugs and appreciation for all the SMA moms, special needs moms, and moms in general. Thank you for your special kind of love.

I appreciate every hoot, coo, and smile Getty makes. I appreciate all the hard work and exhaustion that enables her to be so happy and fulfilled every day. I appreciate that I am able to spend a full day away at work with the peace of mind that Getty is loved and couldn’t be in better hands.

HAPPY MOTHER’S DAY!

Gene Therapy Clinical Trials Begin – Cure SMA

From Mark:

We are elated that Dr. Brian Kaspar’s Spinal Muscular Atrophy (SMA) Gene Therapy program at Nationwide Children’s Hospital is starting clinical trials!

SMA may be the #1 genetic killer of young children, but it is also the #1 disorder closest to treatment or cure of over 600 neurological disorders. Researchers attack SMA on various fronts, and they need funding to make it happen.

That’s were we come in. Actually, that’s where YOU come in.

Getty Owl Foundation has been a proud supporter of the Gene Therapy program from Day One. The research is amazing and offers the best hope for a CURE for our SMA kiddos and all those affected by SMA.

You know that Getty Owl Run/Walk we do every year? It has raises tens of thousands of dollars to advance the Gene Therapy program. We have done craft fairs, art auctions, scavenger hunts, booth events, album sales, contests, etc., and most of the money raised from all of it has gone to advance Gene Therapy. The program is that good, and it wouldn’t be possible without YOU chipping in your hard earned dollars, time, and effort for the cause and businesses forging amazing partnerships with us.

Simply put, the goal of Gene Therapy is to give a single bloodline injection to an SMA child. This injection delivers to the body the one missing gene that SMA kids don’t have. The gene travels by piggy-backing on a special virus. That virus can deliver the genetic cargo to the right place: the cells in the spinal cord that send messages from the brain to the muscles. The new gene makes these cells work the way they should. Signals will get through from the brain to the muscles, and … voila … bye-bye SMA …

FOREVER!

Phase 1 of the clinical trial will focus on safety. The trial is open to the following children:

• SMA Type 1
• Age nine months or younger at the day of injection
• Bi-allec SMN1 gene mutations with 2 copies of SMN2
• Onset of SMA before age 6 months
• Hypotonia with delay in motor skills, poor head control, round shoulder posture, and hypermobility of joints

For exclusion criteria and more information CLICK HERE.

Meanwhile, Getty Owl Foundation will continue its work advancing research, helping SMA families, and raising SMA awareness.

Helping families. Fighting SMA.

It’s what we do.

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!