I have been working with this group for over four years now. One of my very favorite parts about working here is seeing photos of the families that I get to work with on a daily basis. There is just something about putting a face with a name. I also love to see photos of people in their “natural habitats”. See, typically, when I am meeting people in the study, it has been in the context of an evaluation at the research center. I get to know them in the hallways of the hospital and the exam rooms. As nice as this is, it is not always easy for families to be themselves when they are rushing between appointments! I love seeing photos of the families just going about their daily routines. It is one of the main reasons I love hanging out on the Registry’s Facebook page. The photos that families have uploaded there are simply fantastic!!! I love them. Photos of kids at birthday parties, kids on horses, families gathered at an event, just being families. I love them. It is always a pick-up to flip through those online albums. So, for the sake of my happiness, everyone keep posting photos!!!
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