Getty Owl Foundation

Meet Team Getty Runners: Nathan

From Kate:

Well it is Wednesday and that means we introduce you to another member of the Team Getty Runners. This “non-exclusive, all human beings welcome of all ages and abilities, lover of Getty, willing to raise money for research, and ready for the challenge” group will be training for the December 4th CIM in Sacramento all year long. We can’t thank you enough for your commitment to our sweet daughter.

For those that are thinking you would also like to take the plunge, email us at gettyowl@gmail.com and we will get you signed up. To date we have over 40 runners. Awesome!

Our second week is dedicated to a young man named Nathan. Welcome Nathan!

Name: Nathan Wayne Horne
Age: 25 1/2
Day of my birth: July 3rd
Favorite Colors: Blue, Red, and Blue again.
Hobbies: Running, Reading, studying economics, drinking a lot of coffee, and watching movies.

I’m Nathan, and I am originally from Wisconsin. I just got out of the Air Force and a two-year assignment to Omaha, Nebraska. After all the excitement the wholesome cornfields of the Midwest had to offer I decided to move West and came to Sacramento. If you’re wondering why I chose Sacramento, it was done on a whim basically. Sorry if you’re disappointed with that answer. While here I’m going to finish my degree in Economics at Sac State while doing ROTC. I want to be a pilot, and rejoin the loving embrace of the military. Maybe the second time around they’ll send me some place exotic.

I started running back in high school, when I went out for Track and the Cross Country team. Back then I knew I wanted to run marathons, because I love challenges and 26.2 miles is a lot of challenge. The CIM this December will be my fourth marathon.

When I was very young I decided that I wanted to help people. I suppose it’s the sort of thing most people do when they’re children, and everything is so black and white. Children decide that they’re going to be absolutely good to each other when they grow up: they’ll help the poor, give away all their money, and invent great new things to enrich people’s lives. I was that way, but things have turned out differently than I planned all those years ago.

I’m a nice guy: I give money to charities each month, I’m friendly to people I pass on the street, and on the freeway I let people merge ahead of me. But I’m not the man I set out to be when I was young because I don’t give of myself. I don’t give my time to the poor, I don’t volunteer at local youth clubs, I don’t share my talents in the hopes of making things better for people the way I planned to when I was a kid. I don’t know why that is, although I suppose I must admit the biggest factor has been laziness.

Regardless of why I’ve fallen short I’ve decided it’s time to bridge the gap between the person I am today and the person I could be. That is why I am running on Team Getty 2011, and why I’m going to be hitting up everyone I know for donations to the cause. I’m done with laziness and good intentions. It’s time to take action. It’s time to live up to the challenge I set for myself when I was young.

I hope you’ll join me.

Thank you Nathan for giving us a glimpse into your life and we thank you for joining the Team Getty Runners. Getty sends you her official smoochies. Good luck to you in your training.

Golf Tournament Success!

From Mark:

It had been raining fairly regularly in the Sacramento area, but the weather was kind enough to let up for a day of golf — not for me to golf, but for those who do. My personal golf experience consists  of trying to avoid knocking holes in the side of fake castles and windmills. I ventured out to the Granite Bay Golf Club to thank other people for golfing, as their contributions and efforts were going to benefit little Getty and help find a cure for Spinal Muscular Atrophy (SMA).

When I arrived, I wandered around a bit, visited with some friends, and wondered if some of the golfers could get a DUI in a golf cart on private property. I then came across a sign posted near the course that said, “Winter Rules.” I figured whoever posted that sign doesn’t have an SMA child because SMA parents know winter does not rule. In fact, winter kind of stinks because of all the nasty bugs going around that kept Kate and Getty home during this event.  Once I got past this point in my head, I came to realize that the sign was more likely a statement about the game of golf than it was a proclamation of seasonal superiority.

I went inside and jotted down some notes of things I wanted to tell the dinner attendees. Tony, one of the chairs of the event, and Takoa, a good friend and event coordinator, came in and we hashed out the order of speaking. I was scheduled to speak at the dinner right after the presentation of a video featuring Getty and describing SMA. If I stayed in the room during that video, there is no way I could have held it together when trying to speak, thanking everyone for their generosity and support. I stayed out of the room until my time came, and I managed to get through my brief notes. Takoa made some wonderful remarks of her own.

Tony spoke beautifully for the cause. At one point, he asked the audience how many people had attended charitable golf tournaments in the past. Many hands went up. He then asked, of those people, how many had any memory of the causes being supported by those events. Only a couple of hands stayed up. I was amazed and a bit crestfallen. My spirits were immediately lifted when Tony drove the point home that if anyone takes only one thing away from this event, remember we are fighting to find a cure for SMA. It felt good because I think the message got through and this event would not lose its purpose due to  inattention or fleeting memory.

During the dinner, I felt so grateful to all those in attendance and all those who bid on auction items. I wrote some text messages back and forth with Kate, who was home watching Getty. I explained the event was going well, and she wrote back with her top concern, “Do you think people will leave the event talking about SMA?” I think they will, and that alone is wonderful.

We would like to take this opportunity to thank everyone for making the recent golf tournament a huge success!

We humbly thank the following for creating the event and selecting our little Getty Owl as the beneficiary:

• Marcus Marquez / L Wine Lounge

• Tony Glover / Golf & Lifestyle Magazine

We thank the following for coordinating the event:

• Takoa Stathem

• Stephanie Tomasegovich

• Chevas Rainer

Thank you to the following for hosting the event:

• Granite Bay Golf Club

Special thanks to the following and all the volunteers, staff, sponsors, donors, participants, and all those who supported the event in any way:

• Wells Fargo Foundation / Chevo Ramirez
• Matt Taylor

• Heather Giordano

• Jodi Brown

• Will Brown

• Jessica Holcomb / Sassi Salon

• Kaiser Engineers / Howard Stoll

• Justin Bierenstein / Roseville Mitsubishi Kia

• Brooke Tachibana / Tacos at the Turn

• Danny Burlando / El Pueblo Restaurant (Folsom)

• Sac Press

• Merrill Lynch

• Joaquin Ross

• Labor 4 / Matt Kelly

• Slamson of the Sacramento Kings

• Cary Tinker / Piatti Ristorante & Bar

• Lisa Ling

• Laura Ling

• Hoppy Brewing Company

• Chipotle

• Ruth’s Chris Steak House

• Zolcalo Restaurant

• Morton’s Steakhouse Restaurant

• Red Lotus

• Clubhouse 56

• Angie Bohannan

• The Kitchen Restaurant / Randall Selland

• Stacey Ball

• Andi Johnson
• Shea Smith

There may be some more thank yous to come. We are so very grateful to all of you for everything you have done to not only help Miss Getty but also to relieve some of the burden for others, raise awareness, and …

FIND A CURE FORE SPINAL MUSCULAR ATROPHY!

9 Months of Getty Spaghetti

From Kate:

Morgan, Getty’s personal photographer 🙂 came over the other night for dinner. It was nice to have her over to see Getty and she is always good company. She graciously took some pictures of Getty and we wanted to share them. Such a big girl and she is only 9 months old. If you look careful at one of the pics you will see some baby chompies. 🙂 Thank you Morgan for coming over and spending time with us.

Meet Team Getty Runners: Mady

From Kate:

We are so proud of each member of the Team Getty Runners, we wanted you all to meet them as well. Every Wednesday I will highlight a new member of the team.

There is plenty of time to become a member. This is not an exclusive club, the Team Getty Runners are people just like you and me that are helping us fight to cure SMA. Check out the Team Getty page to follow the Team Getty Runners blog and to join in the fun.

So I thought we should start with the youngest member of the team, the strongest member, the warrior of the squad…….Miss Mady! Her mommy, Takoa interviewed her for this post.

Name: Mady Stathem
Age: 3 1/2, almost 4
Birthday: Jan19th
Parents: Takoa, Mike
Brother: Charley
Lil’ Sissy: Getty
Favorite Colors: Pink, purple, and yellow
Hobbies: spend the night at Grammy’s, playing with Charley, having fun by myself,  running in races and winning medals, watching Mickey Mouse Clubhouse

Q: What is Team Getty?
A: “Team Getty is a name for race names.”
Q: Why did you want to be a part of Team Getty:
A: “Because Getty is sick and we’re trying to get her muscles stronger.  I would tell people all over the world I want   them to see me and read the words of Team Getty.”
Q: What would you tell Getty or Kate?
A: “First I would talk to Getty.  I would say, (in a big sister, encouraging tone) ‘I’m gonna make your muscles stronger!”
“I would say to Miss Kate, ‘I’m going to make Getty’s muscles stronger because they’re sick and I’ll win the race.”

Mady completed her first race of the year this past Sunday and her first race as a member of the Team Getty Runners. We are all so very proud of you big sis! Check out more pictures of Mady’s race!

Please Someone Pinch Me!

From Kate:

There have been some incredible things going in the Mathany-Storm household that just needs to get out and more stuff on the way that I can’t talk about yet, but believe me it will be worth the wait. Let me start first by saying the holiday season was a very special time for our family. It was a time of good health, making memories, and enjoying being in the moment. We created some traditions, obtained mass amounts of snuggles and just overall enjoyed being together. We received some wonderful well wishes from people from all over, which gave us great comfort.

Getty’s health has remained stable. She has lost some strength in her arms. The range of motion she once had, has kind of tapered off. Makeshift slings have allowed her to have more range and gives her the ability to manipulate the iPad screen, which in turn gives her more independence. We seem to have a really good daily routine. Feeds, breathing exercises, singing, massages, reading, iPad, and nightly bi-pap. Getty has really taken to the routine and it is so fun to watch her take delight in our nightly routine of singing and reading.

There have been a couple of times when Mark and I were busy taking care of her nightly set-up that we were “late” getting to singing and she certainly let us know. 🙂 The nursery book we read to Getty has about twenty different stories in it. Since it is routine, I am noticing her start to mimic me while I read and/or use similar sounds as I make them.

One night, selfishly I was sleepy, so I thought I’d give Getty the “Cliffnote” version of the nursery book. Um…..bad idea.  She knew and I ultimately went back and read the entire book like I should have. Another lesson learned.

So onto the “Please Someone Pinch Me”. SMA is such a tricky disease. I find that when “good news” comes our way, it is quickly compromised by bad news or the ever lingering prognosis of this genetic disease. I often feel unsure about getting good news, because I just know that bad news might be lurking close by,  just ready to pounce on whatever hope or celebration we may be able to have. It is kind of like an emotional shadow. I am very optimistic person by nature, however, the shadow that lingers can be pretty persuasive at times.

First and foremost, lots of  people have made some gracious donations towards the Team Getty bracelets. To date,  we have already sent out 75 bracelets. We are beside ourselves, that is incredible. That means there are essentially 75 people wearing Getty’s bracelet and raising awareness. Thank you so very much. You are all her warriors now, go forth and educate!

While we are on the Team Getty topic, our dear friend Morgan Saunders has taken on the quest of recruiting members for the Team Getty Runners 2011 team. Throughout the entire  year, the Team Getty Runners will be accepting donations while they train for the December 4th California International Marathon here in Sacramento. All abilities and ages are welcome. Some people are running the entire race, some are relaying, and some are walking. More details to come.

If you are interested in participating or have questions,  please email us at gettyowl@gmail.com. If you would like to follow Team Getty Runners  progress, check out the page called Team Getty and follow the blog. Thank you Morgan for organizing this endeavor. We are simply humbled by your willingness to help organize the team and if I remember correctly there are already over 25 people signed up to run. Awesome!

Alright, last but certainly not least, I have a story to share. I will do my best to summarize but keep the integrity of the story. So Stacey, who is clearly our family’s constant angel, always seems to have something up her sleeve. This story is no exception. There is a band called, The Damnwells that Stacey has been a fan of for some time, beginning with a song called “I Will Keep the Bad Things From You“. An absolutely beautiful song that I have grown to love. I had not heard of the band but I quickly dove in to their tracks and simply was in awe of their lyrics and composition.

We are also new to the blog world and Stacey had been reading a woman named Morgan’s blog called the 818. Turns out that she knows the Damnwells. It gets better. The lead singer, Alex and his wife, Angela had been working on an album of lullabies. And because of Stacey’s connection with Morgan, Alex and Angela read about our sweet Getty. I am so humbled to announce that the title for the lullaby album will be called “Lullabies for Getty”. Commence pinching! And proceeds from the sale of the album will be going to Sophia’s Cure towards SMA research in honor of Getty.

And in attempt to raise the bar even higher of incredible, on January 18th in Los Angeles, CA  there is a Gala called Hope for SMA . Hosted by the Prendiz family. This amazing night will help raise funds for SMA research. In attendance will be many inspiring SMA families, Dr. Kaspar, Vincent Gaynor (Sophia’s Cure daddy :)) and to connect this circle, the Damnwells will be performing. Simply amazing.

If any of you are interested in buying tickets or know anyone who would offer to sponsor this incredible event please go the Hope for SMA link above. Thank you Prendiz family for putting on what will be a very successful and beautiful event.

Okay let me catch my breath. 🙂  Again there are tons more phenomenal news to give, but I can’t talk about some of it yet. Oh the suspense! I am not doing this on purpose, I just want to make sure all of our “ducks are in a row” before we spill the beans. 🙂 But I would bank that all of this stupendous news could hold everyone for a few days. It is for us. This is the kind of news that gets us out of bed everyday. This is the kind of news that renews our faith that anything is possible, this is the kind of news that solidifies the notion that people are good and they care about helping all SMA families find a cure.

All we want is time with our babies, it isn’t that big of a request if you think about it. It would have been something I would not have even thought about if I had a healthy child. But since I don’t, I want to find a way to make that so. Getty as well as all SMA children deserve to have hope and the security of a future.

I thank everyone that has purchased a bracelet. Perhaps someone hearing Getty’s story will open a door. I thank everyone for joining the Team Getty Runners or donating to a runner. Perhaps a person running along side of one of our team members could make a difference. I want to thank The Damnwells, Alex and Angela. You have never even met our sweet Getty, yet you are fighting for her and all SMA children as though you were their parents.

I am learning more and more that we are ALL connected. There is a common denominator that is so incredibly powerful. It is the diagnosis of SMA that so many people have decided needs to be cured.

SMA if you are listening, you had better watch your back because there are so many motivated warriors ready and willing in all kinds of ways to help eradicate you. Your days are numbered.