The idea for Aware of Angels started after I had joined a Face Book group for my daughter’s rare genetic disorder. One of the Mom’s in this group was so, so excited that she was selected to have some photography work done for her daughter by a volunteer photographer. I, being a photographer, thought “what a great idea, how can I sign up to be one of these photographers?” I researched this a little bit and found out there is a national organization of photographers who did this voluntarily and I was about to submit an application when I had the thought “why don’t I just do this on my own?” At the time I was really trying to decide what to do with my business and how I could turn it into something I was really passionate about that also had a lot of meaning to me. From there, it became not just about photography but, how can I incorporate photography into something much bigger? Aware of Angels became my project. We are just about to launch, and I am sure over the years it will become what it needs to be but, in the end it is all about these beautiful children and trying to help them the best we can.
After my daughter was diagnosed with a rare genetic disorder (2q23.1 microdeletion syndrome) last winter, her geneticist recommended I look for a medical student that needed a “topic” to research for their doctorate program because there were no treatments, information or support available for her syndrome. We have been inspired to organize Aware of Angels to do just this but, not just for her. At that time she was 1 in 100 cases reported worldwide (this year with new medical technology and reporting, cases are closer to 200). Her doctor then referred us to family blogs and face book for information and some support on her rare syndrome-that is all he had available. Many families have shared with me that they are going through the same situation as we are. The idea with Aware of Angels is to feature as many of these children as possible, from all over the world, through an online submission, where their stories and images are shared. There is also the Aware of Angels Photography Project to further this awareness. We believe that awareness will equal research, there is power in numbers! With these Angels we will reach the medical field and the general population to cause interest and awareness in these children, and in genetics. We want families to be able to connect-to help each other with their experiences and knowledge. We want to share this information with doctors and researchers to better achieve results. Aware of Angels wants to help those families that still do not have a diagnosis for their Angels. It took us 5 long years to get a diagnosis for our Angel, and because of that experience we want to provide those that are still looking for a diagnosis an option to keep testing when personal funds and insurance will no longer cover lab work. We also want to donate funds to facilities that are researching our Angels and the future of genetics.
If you have a child diagnosed with a genetic/chromosomal disorder (or one who needs a diagnosis) we would love to feature them. We also want to remember those we have lost, and would love to share their stories as well–they are a critical part of this awareness. You have the opportunity to submit an image(s) of your Angel and answer a few questions describing your experiences. You may also apply to be a part of the photography project. We know the importance to parents for other’s to view their Angel as a child with the same needs and desires which are experienced by all children. We will promote this site to doctors, medical students and universities in the hopes of encouraging research. We are looking for sponsors and volunteers to assist in helping these Angels and the Angels to follow. Funds raised will go to research, diagnosing and sponsoring children for the Aware of Angels-Photography Project.
Please visit our web-site: awareofangels.org
Starting Monday March 17, 2014 we are beginning a “virtual launch” on social media sites, to boost the knowledge of our organization. We want to make it fun, so we have sponsors that have donated to our fabulous giveaways, along with a “gift” if you make a donation! Information on our launch is on our Face Book page under Aware of Angels.
Feel free to contact me if you have any questions! [email protected]
