Blogging is hard mostly because you need to keep up with the regular post part. I promise I will try to get one up every week and do a better job manning the post!
Okay so I intended a Whale of a Post, felt lukewarm about a portion of it and now it is a minnow. Anyway I want to talk a tad about UCSD, upcoming fundraising and awareness initiatives and 501c3 filing . Next week I promise a look into my amazing experience working with Kelle Hampton, kick-butt photographer and all-around awesome gal.
Dissecting the Science
I have now been to UCSD twice. The first time I met with Dr. Mobley to talk about the upcoming KPBS series. The second time I took Kelle Hampton with me to tour Dr. Mobley’s lab and meet the scientists behind some incredible discoveries. I am slightly apprehensive about writing this portion of the post for 2 reasons. The first is I’ve never been awesome at science and feel out of my league. The second, I’m afraid to mix classified with declassified intel. So I am going to keep it very top level.
Each time I have left UCSD I exit more fired up than before. The information I am given, which is actually provided in a very easy to follow way (mostly), fills me with hope, direction and purpose. I want to impact the speed at which the cognitive research and clinical trials are happening and I know that will take funding, education and awareness. I have always been surprised at how little people know about what’s happening whether is it is a fellow mom with a child who has Down syndrome or one of the many doctors I see for Dexter.
Obviously I can’t continue to be Miss Vague in my posts and I don’t intend to be. One of my next big goals is to help report snippets of the science (that is declassified) in a way I think most people can digest it (this has nothing to do with comprehension and everything to do with how overwhelming and not easily transferable the information can be). I’d also love to get some podcasts for parents and pediatricians made and ask Dr. Mobley if he’d be up for some parent-Mobley Q & A’s. We’ll see.
We have a go big or go home attitude here at Down Right Awesome. So when we’re planning things they tend to come in intertwined batches, planned for significant impact. Right now in our brainstorm cloud, we’re thinking about a high profile auction, a pediatrician education symposium, a new take on support groups, podcasts (as previously mentioned), guest chef or food truck gathering events, and more. While things seem a little quiet on the DRA home front just know good ideas are cooking.
A 501c3 status is another thing we’re working on. I am taking a page from my fabulous friends at Saving tiny Hearts. They take 96% of all the money they raise and give it directly to research. For us this seems like the most effective path to help meet our goal of turning research into reality for our kids. This task is not a small one, and we’re on it. We’re hoping to file in the next week or two and then we can officially start taking donations, sell our Sweet T’s (without crappy tax implications) and hold fundraising events. We will be posting an order form for the t-shirts shortly and we’re even looking to advertise them with Facebook and Google ads!