Here is what I have posted on my FB feel free to repost, modify, etc.
HOOT HOOT!! (o)^(o) This little owl is being posted to raise awareness about Spinal Muscular Atrophy, or SMA. SMA is an inherited disease that causes progressive muscle weakness that eventually becomes severe., inluding problems with breathing & swallowing. There is no cure or treatment for SMA. The lifespan with SMA is seldom longer than 2 – 3 years. SMA is the #1 genetic killer of young childen, and yet, few have even heard of it. August is SMA Awareness Month! Please spread the word and raise awareness by re-posting!!!
(I included a link in comments to GOF)
Sorry about the Double post, but I had to modify my original facebook post, it now says:
HOOT HOOT!! (o)^(o) This little owl is being posted to raise awareness about Spinal Muscular Atrophy, or SMA. SMA is an inherited disease that causes progressive muscle weakness. There is no cure or treatment for SMA. The lifespan with SMA is seldom longer than 2 – 3 years. SMA is the #1 genetic killer of young childen, and yet, few have even heard of it. August is SMA Awareness Month! Please spread the word and raise awareness by re-posting!!!
(Sorry I couldn’t include all the info… Stoopid FB character limit!!!)
Bearflag70, you probably don’t remember this, but a year ago, back at the start of this thread I mentioned someone I knew and went to school with who had SMA.
I’ve finally found details of her (she changed her name hence not finding her). She died last year. But she was AGED 40!!! She achieved so, so much despite her disability. She was an inspiration to humanity, disabled people, and people with SMA, in that order. And in answer to your question, she had the Type 1 severe form of SMA - but defied the odds.
Bearflag70 I have an eight month old daughter so I can sort of imagine what you’ve been through as a father over the last year. I’d like to think I’d be as strong and positive as you have been and be able to carry on as well as you have if I were in your situation. I’d like to think that but to be honest I can’t. You sir, are an inspiration.
$50 gift card, bragging rights, and momentum in the Sacramento community for SMA awareness.
Personally, I imagine using the blog award as part of our Getty Owl resume to help drum up sponsorships for our local events. We are in the process of seeking sponsorships for our big even, Getty Owl Run, in February 2012.
We initially thought of the August SMA Awareness campaign as not only raising awareness but also a springboard for marketing the Run. The Art Auction was an afterthought and we didn’t originally plan on August being a fundraiser at all. That worked out nicely, I think.
Expanding on this point, what we have learned since venturing into the nonprofit world is that businesses just don’t sponsor nonprofits for the hell of it; they buy sponsorships as a marketing investment. When purchasing a nonprofit sponsorship, they want a return in the form of a name on the shirt, a name on the website, a name on the flyers, access to whatever captive audience the Foundation can drum up, etc.
When we go looking for sponsorships, we have an uphill battle right now because we are in our first year as a nonprofit and this is our first Run. We need to be able to convince businesses their sponsorship dollars will be a good investment for them. Part of that pitch includes us trying to convince them that “we mean business” and we can perform. Hence, we need to build our “resume” and our standing in the community as a cause that is able to grab public attention.
The more successful our events are, the more SMA awareness we raise. That, in turn, helps get sponsorships, which means we can do bigger and better events in the future… raising even more SMA awareness and raising even more sponsorships in an upward spiral.
Since this is our first year, we need as many feathers in our cap as we can get.
hopefully things went well in august for sma awareness.
i see there has been a new addition to the household… little furry kitty rich is just adorable and the pic. with getty and her furry brothers is just too adorable! i’m glad they are all getting along.
SMA Awareness Month went well for Getty Owl, thanks.
We got a resolution through Sacramento City Council
We had a successful SMA Awareness walk
We had a successful SMA Art Auction fundraiser
We had a “Tell 5” campaign where people told 5 people about SMA
The blog was nominated by a local TV station for the Most Valuable Blogger
We helped an SMA family navigate a lengthy stay in the Pediatric ICU
We provided an SMA family with some needed equipment
We assisted a newly diagnosed family better understand SMA
We got a great article in the Sacramento Bee newspaper
Probably some other things I’m not remembering at the moment
