We Couldn’t Do This Without You! Part 3
From Kate:
On the eve of the events tomorrow I wanted to thank some really incredible people that have been so supportive from the beginning.
Thank you to our board, Stacey, Takoa, and Morgan who have helped so much to make sure the walk and art auction the success it will be tonight. Thank you for your time and commitment to help us fight. Just when Mark and I get tired, all three of you keep our spirits high and our minds focused on the goals we have set. We thank you for giving up precious time with your family to help us plan and execute.
I want to thank the walkers for coming out tomorrow. We have over 100 shirts ready to be worn and over 200 SMA Awareness bags to be handed out. I thank you for taking the time out of your day to help us spread some much needed awareness in Sacramento.
I want to thank our families for being so supportive of us. Thank you to the Mathany family and the Stump family for believing in us, supporting us, as and encouraging us to keep fighting for what we believe is right. We hope we are making you all proud.
On behalf of our entire family we would like to thank Ben Schenkel from the Sacramento Bee. We were so excited to get the chance to share our story and to help shed some light on SMA in the Sacramento Region. We really appreciated the time and effort you put into interviewing us. You can imagine our excitement when we opened The Bee to see our sweet Getty on the front cover of section B. We were equally impressed by how you were able to really understand how we view SMA. You understood our passion to help end SMA and give Getty every chance she has to live a wonderful life as all people should. Thank you for explaining the science behind the disease and the cutting edge research now being practiced. You did our community a huge service to shed light on SMA. Thank you for telling our story, we are honored.
If you have not read the story in today’s Bee, here it is. There was one slight miscommunication and that was for the start time of the walk. The walk begins at 6 pm and not 5 pm.
13
Aug
2011
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2011
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We Couldn’t Do This Without You! Part 2
From Kate:
When thinking about how to bring awareness to Sacramento for this year’s SMA Awareness Month, I was nervous, to be honest. I just wanted people to “get it.” I want people to get that this reality could be theirs without getting screened. The shock of being told their son or daughter has SMA is a real situation, and without a cure, more children will be affected and more families will be given the dire prognosis of 2 years or less.
I want people to get that the diagnosis can feel very isolating for a family as well. I remember when Getty was first diagnosed. There was an immediate feeling of “who would understand what we are going through and feeling?” No one we knew had SMA, and it seemed as though we were the only family in the area that had this diagnosis.
Social media saved out souls, quite honestly. Within that first week, Mark and I “met” many SMA families around the US and around the world. We met families who had children the same age and type as Getty. We met families who had recently experienced the passing of their own child. We met adults with SMA, and everywhere in between.
I can’t emphasize enough the comfort a phone conversation or email brings when talking to another SMA Mom or Dad. The strength that comes from the other end of the line is motivating and inspiring. When I am having a difficult day, I know all I need to do is have a quick chat with any other SMA Mom and I know they “get it.”
These families are in a constant fight for their child’s care, they are constantly researching and asking questions of the health care providers, they are amazing parents. I remember a fellow SMA Mom once said, “I wish I had never met you all under these circumstances, but so incredibly fortunate to have you in my life and my child’s life.” It is bittersweet.
We have made some everlasting friendships and I think it is safe to say that Getty’s health is good today because of the support we have received from the SMA community. Without a doubt you have saved our daughter’s life on numerous occasions and we are forever grateful.
The theme for the SMA Art Auction is “Celebration of Life”. All human beings fighting this disease fight it with dignity and grace, unlike anything I have ever been witness to. Getty and all of her friends are simply beautiful souls that love life and are surrounded by such an immense amount love. I wanted to celebrate that. I also wanted to celebrate the love our families have for their children. It is inspiring, it is infectious and it is an energy that is like no other.
I asked the SMA community a few months ago if they would like to donate artwork for the art auction and the support was breathtaking. Each piece of art that will be shown Saturday night was either made from a child and/or adult with SMA or a their family member. Every single piece I am sure was hard to part with. Great care went into every piece made and that alone makes them so special.It was a labor of love to frame them and name them.
I want to thank all of the SMA families and individuals that helped make this event possible.
Thank you families, we appreciate your support and love.
Thank you to the
Pruitt Family
Tapia Family
Banjany Family
Kennedy Family
Gaynor Family
Schmid Family
Butler Family
Lopes-Navarro Family
Jones Family
Barberena Family
Strong Family
MJ Purk
Gooden Family
McClain Family
Ramsay Family
Reed Family
Worrellia Family
Daya-Angelini Family
McDonald Family
Burks Family
Zahn Family
Goeppert Family
Sarah Carlson
Van Fraassen Family
Moroney Family
Barnett-Davis Family
Bundy Family
Anderson Family
Henretty-Sniezek Family
Calafiore Family
All of the artwork will be on sale and all of the proceeds will be going to the Gene Therapy Program at Nationwide Children’s Hospital at Ohio State University. Getty Owl Foundation has committed to raise $5,000 to help find a cure for SMA.
10
Aug
2011
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2011
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We Couldn’t Do It Without You! Part 1
From Kate:
You know planning an event certainly doesn’t work without support. In my three part series called “We Couldn’t Do It Without You” I wanted to highlight and thank those companies and individuals that have really made both SMA Awareness Month and Hoot the Grid & SMA Art Auction what it will be this Saturday, which is AWESOME!
Getty Owl Foundation would like to thank Adam and his staff at AJF Salon for hosting our SMA Art Auction this August 13th from 7-9pm. We thank you for your support and for believing in our cause.
Thank you to our friends at Honey Agency who are some of the most creative honey bees we have every met. 🙂 We are so thankful for their time and energy to help us promote our foundation and events. And just wait till you see our new website they developed for us, simply amazing!
We would like to thank Justin Berenstein, GSM of Roseville Mitsubishi-KIA. Thank you for your generous donation to help make sure that all of our Team Getty warriors have great t-shirts to wear for our SMA Awareness Walk.
We would also like to thank Dave and Bob over at Capitol Digital Document Solutions who printed all of our promotional materials. And thanks to Anthony who drove over all of the materials to our house. That was very sweet of you. 🙂
I won’t lie, we have simply been blessed with support since Getty Owl Foundation began in March. It has been so wonderful meeting new people and explaining why we fight every day to end SMA. It feels as though they genuinely get it. I think the passion they feel for their own business in some ways allows them to relate to our fight. As I was soliciting for sponsorships and donations, I never got one person who didn’t at least want to hear our story and ask tons of questions about SMA. They could have still turned me down for a sponsorship, but everyone was very gracious and so respectful to the info I had to offer.
So without further ado, I want to thank the following companies for sponsoring our event, donating a silent auction item, donating beverages, donating food, donating their time, donating their services, and last but certainly not least, housing a sweet owl for our Owl Hunt. We cannot thank you enough. In a time when our economy is still shaky, I thank you for your trust and willingness to support a great cause.
Okay do you see what I mean? Amazing! We are simply humbled by ALL of the awesome companies supporting our events. Thank you all. We can’t wait for Saturday!!!!
And just in case you missed anything about “Hoot the Grid & SMA Art Auction” here you go!
8
Aug
2011
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Aug
2011
Exomotion EASyS Stroller Giveaway
From Mark:
GETTY OWL FOUNDATION is pleased to give a shout out to one of our “sister organizations” in our common battle against SMA and in a unified effort to help enrich the lives of families affected by SMA.
ADDY GRACE FOUNDATION has partnered with Exomotion to give away an EASyS medical stroller on August 31! Click the link for more details!
6
Aug
2011
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2011
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August is SMA Awareness Month in Sacramento! It’s Official!
From Mark:
Last night, I made a presentation before the Sacramento City Council, as Getty’s daddy and also on behalf of Getty Owl Foundation. I accepted a resolution officially declaring August as SMA Awareness Month in the City of Sacramento.
Thank you to Councilmember Kevin McCarty for making this possible and for supporting the cause. Thank you also to the City of Sacramento for your efforts in helping raise SMA awareness.
We are so excited that SMA was recognized in the chambers and equally excited that this is an eternal proclimation, so EVERY August is SMA Awareness Month in Sacramento!
Here is a video capturing the moment:
After the meeting, I rushed home because I knew Getty wanted to see what I had been up to. She cooed with delight.
Hoot! Hoot!
5
Aug
2011
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Aug
2011
