A few months ago, I wrote a blog post for the Cystic Fibrosis Foundation. I attached some pictures of Avie and talked about getting her diagnosis in utero. A few weeks later, I was contacted by someone at the National Institute of Health (NIH) asking if the director could use Avie's picture when he addressed the senate.
For those of you who don't know what the NIH is: it's the nation's research agency. Scientists who research ways to make us healthier, fight diseases and come up with new treatments as well as fund other research centers and organizations. Their tag line is "Turning Discovery into Health".
The NIH had recently been granted a huge amount of funding and the director was going in front of the senate to discuss the appropriations of this funding. Why wouldn't I want Avalyn's photo up there?!
I gave my permission and her photo and story were used for TWO senate hearings. It was really neat to watch the meeting online, where the director talked about my baby and how they are working to find a cure for CF.
Last week, I was contacted again. The director wanted to use Avie's photo for his blog page, where he was going to write about the recent breakthroughs in a study for new CF treatments. You can read the article, here.
I just love that he likes her cute little face so much!