Getty Owl Foundation

When Did This Happen?

From Kate:

Dear Getty,

I need to write to you in the hope that you will understand what you are putting me, your mother through these last few months.

You have blossomed into a little lady before my eyes. When did this happen?

You are independently finding ways to entertain yourself. When did this happen?

You are sassy and at times sarcastic with me and my motherly ways. When did this happen?

You watch movies or shows now and laugh literally when an adult should, which creeps me out sometimes. When did this happen?

Your attention span to absorb anything and everything is so beautiful. When did this happen?

Your determination to vocalize letters, numbers, and words, undeniably makes this mom’s heart sing. When did this happen.

You are learning and growing leaps and bounds in pre-school. When did this happen?

We fought so hard to get you everything you need for your education and yet as I sit behind you and your teacher and just watch and listen I am sometimes in agony. It is like for those few hours you are engrossed in math, letters, books, etc. you get to be with someone else and not me. You should be and you deserve to be, but this mama hurts sometimes. I guess if I could compare it to when I went to school and left my mom for the day. I wonder if she missed me? I’ll need to ask. Once school is over I get to see your beautiful face and we get to continue our day together.

I am so very proud of you babe. I am so proud of your determination. I felt compelled to tell your doctors just how incredible you are and all of the milestones you are accomplishing and how you are so crazy smart. I got to feel like that mom that beams from ear to ear to gush about their child. Yep, I am that mom. I remember after I gushed I looked at your face and you rolled your eyes, to which my response was, “get used to it missy, you are kicking  butt kid and the world will know at any chance I get.” Sorry Getty but you are stuck with me.

I stopped seeing the word terminal a long time ago. I see the word future in every direction and I see all of the great things you are going to do and accomplish.

You get your power chair in a few weeks and I can assure you that mama is going to gush again. Everywhere to everyone.

When you were diagnosed I grieved about all of the things I thought you would miss out on in life. I grieved as a mother about the things I thought I would miss out on as your mom. But you know what? THIS is far better than I could have ever imagined as a mother and you, my little owl are more than I could have ever asked for. You are flawless, you are incredible, you are beautiful, you are patient, you are intelligent, you are a dream come true.

Now I just need to figure out how to get you to listen to your teachers and not sass them. If history serves me correctly I was the same way. So basically we are in trouble. 🙂

I love you.

Your ever so diligent and loyal servant,

Mom (Or the way you yell at me down the hallway, “Ommmmmmmm)

Sports Authority’s Support is Awesome. Come Out This Saturday!

From Kate:

Come out to the Arden Sports Authority location THIS Saturday, January 25th from 11-4pm to not only register for our 3rd Annual Getty Owl Run/Walk, but also receive a 15% discount on anything in the store.

Here is the coupon. We will have them on hand as well. Come by our booth and register online, by check or cash.

Hope to see you there.

Printable Coupon: Sports Authority Night January 25th

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!