Getty Owl Foundation

Getty vs. Goliath

From Mark:

We are no strangers to fighting the medical bureaucracy to meet Getty’s needs. When Getty was diagnosed with Spinal Muscular Atrophy, with a dire prognosis of having no strength and being with us until only age 2, we swore we would provide Getty anything she needs to live the best quality of life. 

Getty is almost 4 now and doing well with proper care, despite her lack of physical strength and the ripple effect from it. They were wrong about Getty’s life with SMA, and we have fought to prove them wrong. The latest fight on our agenda was for a power wheelchair approval, and we would not allow them to deny Getty the gift of independent mobility.

Getty cannot move herself, nor can she articulate words to let anyone know where or when she wants to go somewhere. We move her as best we can in ways we think will make her happy. How amazing would it be for Getty, at nearly age 4, to simply go wherever it is SHE wants to go? It’s no wonder she hooted and squealed as she drove a trial power chair, wide-eyed … even driving herself out the door.

Seeing Getty so capable and thrilled to experience independent mobility, there was absolutely no way we would back down in the face of the obstacles our provider put in her way. We argued, scraped, clawed, made seemingly endless phone calls and sent emails to anyone and everyone willing to help. We filed a grievance, did our own medical research, submitted nearly 80 pages of written argument, argued before a committee, and went up against Goliath for Getty to get her a chair. Our basic message: Getty deserves to “walk” like an able-bodied child.

About a week before Christmas, things did not look good. We were fairly certain the committee would deny the power chair, and we would be left looking forward to endless fights and appeals. We fired off one last ditch letter and hoped it was enough to tip the scales.

On Christmas Eve, Kaiser APPROVED Getty’s power wheelchair. The icing on the cake was a written APOLOGY for our “negative care experience.”

Receiving that letter ended a year-long struggle we took on for Getty. We were now finally able to step back and breathe, exhausted, realizing most of the major fights for things Getty needs are over and won. The power chair victory is possibly the last huge fight on the radar, and we greatly appreciate all the SMA warriors who joined her fight. THANK YOU!

Looking forward, we are so excited to see Getty driving herself around, going where she wants to go, and doing things she wants to do. We are elated Getty has strength and coordination to put a power chair in her reach. In a way, we feel privileged to fight for her.

We hope to blaze trails for SMA children who may follow Getty’s path. We draw on our experiences, passion, and skills to help other SMA families advocate for thier needs. We encourage not only SMA families, but anyone, to believe in the power of perseverance.

For years, we have been going up against Goliath — an enormous medical bureaucracy with a habit of issuing denials reflexively. The power chair battle alone consumed nearly a year all by itself. Through hard work, a refusal to yield, and tapping every resource and ounce of energy we could muster, we not only got what Getty needs but also an apology, as a nice Christmas bow.

Next step: Getting her own custom chair.

Keep fighting!

2013 Year-End Donations

From Mark:

Getty Owl Foundation has had another fantastic year and impact on Spinal Muscular Atrophy (SMA)! We have been able to do so much thanks to the active participation of friends, family, SMA families, and SMA Warriors. None of this would be possible with the generous support of our donors and supporters. 

Getty Owl Foundation has helped greatly improve the lives of SMA children and families. We have helped lessen the devastation, burden, and learning curve for newly diagnosed families. Familes have ready access to a network of other informed, experienced, and supportive SMA familes. They have critical medical literature at their fingertips and telephone support at any time of day. We help families advocate for their medical needs when medical professionals and health insurance carriers fail to fully apprciate the nuances and full spectrum of SMA management and care. We have helped families secure medically necessary equipment and supplies that are and often unavailable to families through their doctors or insurance.

We help give familes hope in the face of SMA, a cruel and harsh disorder — the #1 genetic killer of young children. We offer SMA families our love, knowledge, and support, and show by example, that SMA children can leading long, fruitful, and happy lives with proper care.

Our major fundraiser is the Getty Owl Run/Walk. Our 2013 event was fantastic, bringing the community together in a warm show of support and solidarity. The event and our work raises much needed SMA awareness, and encourages those planning families to seek genetic counseling and SMA carrier testing.

Through your fundraising support, we recently made a $10,000 Getty Owl Grant to fund SMA Gene Therapy research, which will begin human clinical trials in just a few months! A cure for SMA very well could be in sight, and your support can help make it a reality.

Another amazing achievement in the SMA Community this year is the passage of the National Pediatrictional Pediatric Research Network Act (NPRNA), signed into law just this month. Through the National Institutes for Health (NIH), the NPRNA creates a research network for SMA and other rare children’s diseases.  This collaborative network promises to move SMA research ahead even faster. We deeply appreciate all the hard work and dedication of all the SMA warriors and sister organizations who lead the way to push this through.

We look forwrard to more great things in 2014, but we need your help to keep the momentum going. Today is the last day to make 2013 tax-deductible donations to Getty Owl Foundation, a tax exempt 501(c)(3) chairtable organization.

Together we can win!

Please donate today and thank you for your continued support!

$10,000 Getty Owl Grant for SMA Gene Therapy!

From Mark:

We are excited and proud to announce that the help and generosity of our donors and SMA Warriors is paying off!

Getty Owl Foundation has delivered a $10,000 research grant to advance the Spinal Muscluar Atrophy (SMA) Gene Therapy Program of Dr. Brian Kaspar at Nationwide Children’s Hospital. Getty Owl Foundation made the same grant last year.

Based upon successful mouse model studies, this program appears to be the best hope to CURE SMA of all the projects in the SMA research pipeline. If the research is successful, it will help save and improve the lives of thousands of children and families around the world, putting an end to the #1 genetic killer of young children.

SMA is caused by a single critical missing gene, called SMN1. Without SMN1, muscles simply don’t work, and the ripple effect is devastating. Children are prone to deadly respiratory problems because they cannot swallow or cough, typically passing away by age 2. SMA kids often cannot move, cannot form words or eat by mouth, have low bone denity, experience random plugging of airways, suffer digestive problems, and the common cold can be deadly.

Managing SMA and educating medical professionals takes loving Herculean effort and dedication from SMA parents and warriors. Depsite the challenges, SMA kids are some of the brightest and happiest kids you’ll ever meet, and SMA parents, most loving and tenacious.

There is hope! SMA is the #1 disorder closest to treatment of over 600 neurological disorders.

Gene Therapy replaces the missing SMN1 gene by delivering it into the body, carried by an inert virus. SMA mouse models show Gene Therapy can allow SMA mice to live and function almost as if the mice never had SMA in the first place. By looking, you may not be able to tell the difference between a regular mouse and an SMA Gene Therapy mouse. Gene Therapy mice are not limited by the typical short life expectancy caused by SMA. Non-human primate models also show great promise. The research is amazing!

In September 2013, the FDA approved Gene Therapy to begin human clinical trials. In October, the FDA fast tracked Gene Therapy to expedite review and development of the program. In November, Dr. Kaspar received a distinguished honor of being named a fellow by the American Association for the Advancement of Science (AAAS). Congratulations, Dr. Kaspar!

Dr. Kaspar writes, “We are honored [Getty Owl Foundation is] supporting us in our pursuits. I am truly thankful. We will use the funds to address scalability if vectors for all programs and we indeed are making great progress on these fronts and adding additional emphasis to this project is greatly appreciated. We are very thankful for Getty Owl Foundation’s continued support. We look forward to making great progress in 2014 and cannot wait to get to trials. We are hoping to enroll the first [SMA Type 1] patient in March 2014 [ages] birth to 9 months and I’m trying to get the momentum to start another trial on both older type 1s and type 2 and 3. Many thanks!  I won’t rest until we’ve made an impact on this disease.”

This is all made possible by our wonderful donors and SMA Warriors. We are overjoyed with the ability to not only care for our beautiful Getty, but also, through Getty Owl Foundation, help SMA families and advance SMA research.

We cannot do this without your support. We sincerely appreciate if you consider Getty Owl Foundation for any year-end charitable contribution. Any amount helps.

We also seek sponsors and runners for the 3rd Annual Getty Owl Run/Walk on Sunday, February 23 at Crocker Park, Sacramento. We hope you can participate as a sponsor, runner, walker, and/or virtual runner. Virtual Runners participate in their own locations and we will ship the event shirt and goody bag to you. PLEASE REGISTER TODAY or donate here.

Thank you and Happy New Year!

Getty Experiences The Nutcracker

From Kate:

Let me just start by saying that Getty had an amazing time! AMAZING!

Okay back story. 🙂

Yes it is RSV season. Yes this is the time of the year when our SMA kiddos are most susceptible to illness. For the passed three years we have been in lockdown from October to March. We stay inside, we create our own little world in the confines of four walls and we hunker down in fear of illness. It is a real fear and it can suffocate all persons in the house. However, I will say that you can get used to it. I know I did. It was maddening the first year. Then the second wasn’t so bad. And this year I was ready to go. Lockdown was going to happen and we would be good. Until I saw a commercial on TV.

The Nutcracker was performing their annual ballet in Sacramento. I remember once going as a kid and while I did not walk out of the performance pleading with my Mom to become a dancer, I definitely enjoyed the performance. The music was amazing, the dancing was so beautiful and it I got an overall warmth that Christmas was coming.

So while Getty was napping one day, the commercial caught my eye. Then my brain started to ping around and I called to order tickets. I ordered tickets during RSV season. I was actually contemplating pulling Getty out of her sterile environment and taking her to a place that I had no idea what the level of germs were. I bought tickets for the 7pm show thinking that the likelihood of snotty and coughing kids would be surrounding her would be less. They had accessible seating, good. They were close, but not crazy close so it wouldn’t overstimulate Getty, good. But still it was a closed public theater and I had no control over what others may be bringing in.  I still bought the tickets.

I bought Getty a dress, a sweater and tights to wear. She would wear her ballet slippers. We were doing this!

This past Saturday, we all got dressed up, packed the car with all of Getty’s equipment, and all of the “what if this happens, worst case scenario items” and went to the see The Nutcracker.

It is not easy for us to really recognize what Getty is interested in. She is such an easy going kiddo, but also she can’t verbalize whether she loooves something. Well I am here to tell you that ballet IS her thing. From the moment the curtain went up, our child was in a ballet trance. We could see her eyes move from side to side, taking all of the intricacies of the production. Her eyes jumped up and down as she followed each ballet dancer. Her eyebrows lifted higher and higher as sets changed right in front of her. She cooed at different times as to show her “approval”. I know she enjoyed the music Getty loves classical music. Some of the music I know she recognized. Fantasia is one of her favorite movies. I often whispered in her ear, “you know this song remember?” Boy, did I learn my lesson. If a child could do a sideways eye roll, she did. “Mom, don’t bother me.” That is when I knew we had found something.

We had found something Getty seriously enjoys. We didn’t need to guess, we didn’t need to assume, and we certainly did not have to convince her of anything.

Classical music with people dancing=AWESOME!

The night was magical. I didn’t freak out about germs. It was one of those situations that you let it be and enjoy the ride. And we did.

I do believe that more ballet performances are in the near future. We found many performances on youtube already. I think Getty is already creating a “ballet list” in her head.

In the spirit of the holidays, we hope everyone has a beautiful, special, and safe holiday season.

Here are some pictures from our great night. Getty is usually scowling. That is her way of saying, “no more pictures, let’s get this show on the road.” 🙂

Team Getty 2013

From Kate:

We swam, we biked, we ran. We saw coastal shores, high hills of mountain trails and asphalt, blue and rapid waves of a lake, and wooded areas of plenty. We sweat, we froze, we sweat, we froze, we sweat, we froze. 🙂 We fell over and skinned our knees on several occasions. Sorry, not we, I mean, me. We cheered each other on, we patted each other on the back, we hugged, and we proudly wore our Team Getty shirts.

2013 was a beautiful year for Team Getty. Signing up for a race is all well and good, but it is the training and the getting ready for the day that seems to be the hardest. It is not easy to fit in days to run while also taking care of Getty. I would like to thank Mark for stepping in when I needed to get in some mileage.

I would say that right after our 2nd Annual Getty Owl Run/Walk, there was feeling of adrenaline running through my veins. I wanted to push myself more than I ever have. I wanted to sign up for as many runs as I could to get SMA awareness out into whatever city I happened to be in. That is when the ” crazy” began. A few of my crazy friends, who shall remain nameless, started signing us up for half marathons every other weekend. I didn’t even have a chance to say no, one of them had already registered me. Thank you both. That kind of crazy, I mean motivation was what I needed to continue pushing.

Our 2013 Team Getty was a band of amazing individuals that took the time to help spread SMA awareness. You guys are awesome and I hope that you realize how motivating it was for me to know that we were all doing this together. It felt comforting to know that our mighty team was rockin it out there.

I would like to thank:

Krista

Stacey

Mike

Mike

Chrissy

Rici

Shane

Caitlyn

Melissa

Maida

For their commitment and love this year. I can’t tell you how invigorating it is to have a group of people want to be a part of Team Getty. Selfishly what I do know is that every time each member stepped up to the starting line and completed their distance, they made a difference of educating hundreds of people about SMA.

The back of our Team Getty shirts say:

“1 in 40 carry the SMA gene responsible for the #1 genetic killer of young children. Are you a carrier?”

My hope is that participants of each and every event saw this message and took the time to contemplate its call to action. My hope is that after each and every race, someone went online and looked up our website to check out more information about SMA. My hope is that after each and every race, someone felt a sense of duty to tell another person about SMA. It always starts with one person and I hope it started a conversation, a question with a doctor, an overall demand to help fight the #1 genetic killer of young children. The more people that know and talk about it, the less places SMA has to hide.

In June I registered for the California International Marathon. I am still not quite  sure why, but at the time it was far enough away that I didn’t really have to think about it. Then as the months got closer, it was clear why I was doing this. I wanted to meet Getty at the finish line. I wanted to push myself farther athletically because in certain ways I wanted to show Getty that I could fight just like she does every day. I wanted her to be proud of me. And to know that she would be at the finish line after 26.2 miles seemed like the best possible scenario to accomplish that goal and to share a special moment with my little lady.

So the day came. I froze, I ran, I jogged, I walked, my knees gave out at around 20 miles, I ran, I drank water, I ate copious amounts of energy everything. I did not do this run alone. Chrissy thank you for being my wing girl in this whole journey. No way could have finished this run without your encouragement.

The finish line was coming closer and closer. At 25 miles I just starting crying. I knew I was near and I knew Getty was waiting. The flood gates of tears and my need to end this run so I could just hug her pretty much came to a beautiful crescendo as I turned the corner to the see a the beautiful FINISH LINE. And wouldn’t you know it, Miss Getty was right there waiting for me. They allowed Mark and Getty to come inside passed the gates to be right there. My heart just about blew up when I saw her pink jacket. My body seemed to push me forward as if I was on auto pilot just to get me to the end.

As I crossed the finish line and I immediately ran over to Getty to embrace her little face, grab her little hand and tell her how happy I was to see her. Never, in a million years will I ever forget that moment, how my heart melted, and how I could not wait to tell her how excited I was to see her.

Ironically, one of the things I really wanted to do at the end of the race was to give her my medal to wear. However, girlfriend was already adorning a medal. How very sweet it was for the volunteer to give her one already. I will never forget the look on her face as I realized she already had a medal. It kind of like, “I don’t need yours Mom, I have one already. What took you so long to get yours?”

So yay, 2013 was pretty much awesome. My one outlet as a mother is to run. Whenever I am stressed, whenever I need a chance to ground myself, whenever SMA just gets to be too much, I run.

So what does 2014 look like for Team Getty? Just as ambitious. I hope our Team Getty can grow in numbers and I look forward to spending time with our group of bandits, pirates, and/or crazies as I like to call each of us.

I am one lucky human being. I get to be this little lady’s mama.

 Here is to 2014!