Getty Owl Foundation

Online SMA Art Auction Starts Tomorrow!

From Kate:

Okay so tomorrow it begins. For all those that were ready to get your hands on some incredible art made by the SMA Community, the time has come.

Tomorrow will begin the first of many days that you can bid online for pieces of art to help raise money for Getty Owl Foundation.

Every day we will offer 5 pieces. You will have 24 hours to bid on each of the pieces and then there will be 5 more the next day to bid on and so on.

We had a lot of fun last year and I hope you can help spread the word about the auction to get all kinds interest and big bids coming our way.

We have already picked out the first 5 for tomorrow and are so excited about it. We would love to give a sneak peek, but we can’t. 🙂

Hope you can support the auction and start bidding wars, or whatever they do at auctions. 🙂

Hoot the Grid Recap and More to Do During SMA Awareness Month!

From Kate:

Well to recap Hoot the Grid is simple, it was a success! As a board we set goals on what we wanted to accomplish and we met those goals. The salon looked beautiful, adorned by so many fantastic pieces of art, donated by members of the SMA Community. Again, I want to thank AJF SAlon for welcoming us once more this year. I want to thank Stacey, Takoa, and Sarita for helping make this night a success. I want to thank all of our sponsors for their continued support for our cause.

I want to thank many volunteers that braved the hot weather to come out and assist in all kinds of ways. Lots of SMA Awareness got out in to the community that night and honestly that is what is most important. The more that know, the more people are talking about SMA and then SMA continues to lose hiding places. Mission Complete.

Can we talk about the weather for a second? Listen Sacramento gets hot, but for Pete’s sake. Not even a breeze came by just to help take it down a notch. We heard that had actually kept many people away from the overall 2nd Saturday festivities in Downtown Sacramento. But to quote Pete the Cat; “We just kept rolling along and singing our song, because it is all good.” We made the best of it and we had a great time and for those that came to support Hoot the Grid, we say thank you!

Mark and Getty came for a bit as well. While Mark was inside thanking our guests, Grammy, Getty and I went on a walking adventure. At every block we asked her if she wanted to keeping going. Um…yep. So we walked about 6 blocks and then came back to the salon.

Stacey lit the candle at 8pm to celebrate and honor all of our SMA warriors and angels. The candle lighting is a special moment every year. To know that thousands of people in their own time zone are lighting a candle for the same reason is very powerful. For that moment we are unified in our honor for those affected by SMA and for the one’s that fought so gallantly.

Thank you to all who came to support us.

Alright next steps. There are still 3 ways you can help support us in the month of August if you would like.I will list them.

1. Participate on our SMA Art Online Auction.

2. Attend our SMA Awareness Night game at the River Cats on August 25th.

3. Tell 10! ( it was 6 but I’ll explain)

1. Last year after Hoot the Grid, we immediately opened an online auction, allowing anyone to bid on the remaining pieces of art. I’ll be honest, this was sooooo much fun last year. It was fun to watch people bid and then try to out bid each other. Kind of like wrestling online. 🙂 So this year the online auction will begin Thursday, August 16th. 5 pieces will be offered every day to be bid on. You will have a full 24 hours to bid on those 5 pieces.We have enough artwork to auction off for about week. We will be taking the weekends off from auctioning. We found last year to be very slow and so we want to make sure that all of the incredible art has a chance to be seen by lots of people. We hope you join in starting this THURSDAY.

2. We are very excited about SMA Awareness Night at the River Cats. There is a special way to buy your tickets. If you go to our website there is a button you will click on to purchase the tickets, BUT WAIT! before you go there, notice the quick instructions before the button. You will need to scroll through the linked page and find “Getty Owl Foundation” and then after clicking on that you will include this code: “SMA” and then buy your tickets. Click here to buy tickets.

We apologize if this process is a bit confusing, but this is the only way that Getty Owl Foundation gets “credit” for selling tickets, which turns into some of the proceeds going to the foundation. If you buy tickets on the day of, no proceeds will go to the foundation. If you are having any trouble buying tickets, you are more than welcome to email us at hoot@gettyowl.org or call at 916-476-3977. I don’t mind taking you through the process. 🙂

It would be great to get support for this night. Again, awareness is the goal and it is a baseball game. And who doesn’t like a good baseball game. 🙂 Hotdogs, beer or soda, and some good family fun.

3. Okay let me explain Tell 6!. Last year we did Tell 5! which meant we sent out 5 bracelets and 5 SMA Fact cards to anyone in the world who wanted them. Another attempt to spread SMA Awareness. It was a lot of fun and we ended up sending out over about 1,000 bracelets and cards to people around the world. Very cool! Okay so this year, I have decided to bump it up to Tell 10! No reason, only to spread the word as much a possible that will fit in our little manilla envelopes. 🙂 So contact us in any way you want and I will mail them out to you. Your job is to help spread the word. A big thank you to those that that have already offered to help.

Okay so that is the what we are doing for the rest of the month. I know that was a lot of info, but this really is “the” month to take SMA to task. Hope you can join in us in any way you see fit.

Here We Go, 2nd Annual Hoot the Grid Tomorrow!

From Kate:

There has yet to be an event that we have put on that I haven’t taken a moment a few days out and cried. Just cry and “cleanse” my emotions. I cry because another event is happening where we can educate the population about the #1 genetic killer of young children. So last night was my moment. I was sitting in the IKEA parking lot after doing the 3rd frame run. I wept and I know exactly why.

Events don’t just haphazardly happen. There is planning involved obviously, but there is another component to this that always gets my water works going. It is the support of others that will always humble me. Hoot the Grid is a very special event in particular because it is an event that I ask the SMA Community to support. Without families chipping in to create art, we would have no event at all. And then I think about the love and care that all of these families put into their art. Some are photographers and some are incredible artists in woodworking, drawing and painting. Then I simply lose it when I think of the children and adults that are diagnosed with SMA that created computer images by themselves, held the hand of their parent or used an arm sling to create works of art. I know when Getty creates her works of art there is always a sense of determination and happiness in her eyes. She is independent for that moment she can swipe her brush against the canvas.

All of these pieces that have been donated are very special in so many ways. I want to thank the SMA Community for being so kind and gracious.

I would like to thank AJF Salon for hosting our event again this year. Adam and your crew have always made us feel like welcome guests. We appreciate your hospitality.

Thank you to Honey Agency. The only reason we are ascetically appealing visually as a foundation is because of your staff’s hard work and talent.

I would also like to thank the following businesses for supporting Hoot the Grid:

Cupcake Vineyards

Hoppy Brewery

Sacramento River Cats

Downtown Grid

California Footwear Company

Birkenstock Midtown

Dandelion Magazine

Starbucks

The Couch Sports Lounge

Active 20/30

Swanbergs

Pera Dice

Lady Bug Lady Bug

Centro

Noah’s Bagels

We know you have many charitable cause choices and we thank you for choosing Getty Owl Foundation.

So here is the scoop for the 2nd Annual Hoot the Grid

-Volunteer SMA Walkers can pick up their SMA packets Between 5-7pm @ AJF Salon at 3016 J Street, 95816

-SMA Art Auction at AJF Salon is from 7-9pm with a quick reception & candle lighting at 8pm.

We hope you can come by and support our event.

-Over 50 pieces of art are available for sale.

-Our Getty Owl Foundation tent out front with all kinds of SMA info and GOF event dates and  a cool wheel to win things.

-We have live music this year. Clemon Charles will be playing for the entire event.

-We have a HUGE spread of Silent Auction items to bid on.

-Beer, wine and deserts will be served.

-And last but certainly not least there will be lots  of SMA Awareness info all over the gallery.

-Any other details I may have missed go here.

If you can’t make it but would still like to support GOF, we have SMA Awareness Night at the River Cats on August 25th. Here are the details.

Bump! Set! Spike! (Hi, Miss Morgan!)

From Mark:

Getty has Olympic volleyball fever and misses her “big sissy” Miss Morgan, volleyball player extraordinaire, who is in a land Down Under for a while. Hi, Ms. Morgan!

Bump! Set! Spike!

SMA Awareness Month

From Kate:

On the first day of August, SMA Awareness Month, it would seem only appropriate to reflect on how life has changed for us or better yet, keep in perspective how life for anyone can change  in a moment.

Yesterday marked the 2nd anniversary of Getty’s diagnosis. And as fate would have it, I completely forgot. Not only did I forget but she had a pulmonology appointment in the same building, in the specialty clinic that she was diagnosed. And if I am not mistaken, the same room. So either I had not exceeded my daily intake of coffee to be alert enough to notice or I just didn’t even remember. You would think it would be a dark cloud hanging over us while the days got closer to that fateful day. But no, hadn’t given it much thought, and I think that speaks volumes to how we live our lives as a family.

What I did care about was getting her up in the morning. Getty is not the most willing participant in the morning, especially if she needs to be woken up earlier than usual. I hear the moans and grunts of a monster being awoken from her cave. I love laying next to her as she finally opens those beautiful blue eyes. I love being the first thing she sees in the morning. After the fluttering of eyes ended, this “monster” gave me a very cute smile and yawn. The day had officially begun.

Her appointment went great. Getty’s lungs sound great. At this time the settings on her bi-pap do not have to change to increase breathing support. Her weight is perfect and she is growing proportionally. Our giraffe is 36 inches long and 26.7 pounds. She giggled throughout our appointment with her doctor. I know that as I spoke to her doctor, Getty would quickly glance over at me, momentarily straying from Sesame Street to give me a “checking in” smile.

Who would have guessed that over 2 years ago we would be sitting in this office, speaking to specialty doctors about the #1 genetic killer of young children. Who knew that Mark and I both were each the 1 in 40 carriers of the SMA gene. Who would have guessed that we would have to become experts in everything related to SMA and in such a short amount of time. Every second of ignorance could potentially harm Getty and that was not going to happen on our watch. Who knew that as I spoke to her doctor today, it was almost like speaking to a colleague in the field. But this is our life and this is our new normal.

When Getty was diagnosed with Spinal Muscular Atrophy on July 31st, 2010, I instantly felt the walls of “supposed to” fall in an instant. I realized that at that point, this was obviously not going to be an easy road, but I did know that with this diagnosis came a sense of freedom. Disbelief, shock, denial, anger, etc. but in the same breath, we had the ability to write our own story. Mark, Getty and I had the ability to live life how we wanted. The burden of juggling life into the air and to be everything to everyone had become moot. What mattered most is Getty.

That kind of clarity continues to change Mark and I profoundly and in so many ways. SMA is a very scary disorder. Getty can be fine one day or moment and then the next you are trying to remedy everything you can to help find a solution to whatever you think may be happening to her. You can’t just call a night nurse and find a solution. SMA is not in the guidebook, and if it were it would probably just say: Neuro-muscular disease, lifespan 2 years, or something vague and dreadful. Ultimately it is on you to find a solution. SMA is also very nuanced. Every child is different, which can also have it’s own challenges.

We have almost lost Getty at home several times. There have been some very scary moments that have shaken us to the core. However, the moment it is over and she looks at us with such trust, you have no alternative but to bounce back and continue on. So if we were in the middle of reading a book, we finish it. If we were on a walk, we get to the duck pond, because that is where we told her we were going. If we were blowing bubbles, we better continue because she deserves to watch the bubbles pop on her nose, hands and legs.

So when I mention clarity, I mean it in the sense that life is so incredibly precious and it can be taken away in an instant. Something  so profound to learn 2 years ago. One  cannot control everything. As hard as I tried and as hard as I worked as a mother to make sure all went as planned, while the effort should be given a medal, the idea of control is feeble. All we have are beautiful moments with Getty that started as seconds, then minutes, that turned into days, that added up to months, and now years.

I had a very proud moment yesterday when Getty’s doctor looked at me, and instead of giving me the usual sad “how are you doing” look, it was, a celebration of how “awesome Getty is doing” look. Receiving that accolade in that moment felt reassuring that we are doing what is best for Getty and that she is thriving. I have not been holding my breath waiting for some positive feedback for the last 2 years, but it was nice to hear, regardless.

This diagnosis has never felt like a private. Private flew out of the window when we realized how many people have never heard of this SMA. It flew out the window when we knew there was hope and life to be lived with in a terminal environment. We hope we have shared enough about our journey to give those reading a window into what SMA looks like, how devastating it is for a family, how we need more warriors to spread the word about what we would consider a very prevalent and under-diagnosed genetic disorder, how we need a viable treatment, and how we need a CURE.

As a family and as a foundation we are trying our best to do what we can to spread the word, help families in need and raise funds to help find a cure.

Caring for Getty is a full-time job and that is where we choose to put our efforts. However she does sleep. 🙂 so when she is sleeping, that is when we work as hard as Santa’s elves to make phone calls, blog, write emails, etc. to do what we can. We are proud of the work we have done so far, but know that there is so much more to do.

We are fortunate to be in the company of so many incredible SMA families and SMA non-profits that are fighting against SMA as well and have been steadfast in their efforts far longer than we have. Let’s just say that SMA has a lot of enemies. 🙂

In commemoration of SMA Awareness Month, in honor of our daughter Getty and all angels and warriors of SMA, Getty Owl Foundation will be donating $10,000 to the Gene Therapy Program at Nationwide Children’s Hospital at Ohio State University. We believe in this program and their promising progress. We are just so thankful for the support of others to be in this position to be able to donate.

SMA needs to end. For Getty’s sake and for all human beings affected by SMA. They all have way too much living to do then to be held back in any way by SMA.

So in the month of August could you:

Help spread the word.

Come to an August event.

Put on your running shoes.

Make a donation.