So the title might have given it away, but I am in the process of filming and editing my own documentary. I have always been interested in filming and creating movies and this is my first real/professional movie. I started this project back in January or so and I am trying to finish by this winter, 2015. The reason I am sharing this on here, is because this documentary is about FSHD and it’s impact on my family’s life. So far I have only interviewed my grandfather and myself and I still don’t know who I want to interview next. I don’t want to have too many people, but maybe that would be more interesting, to see my whole family’s view on it. My grandfather, mom and I have FSHD, but my dad and sister do not. I think it would be great to see FSHD from their point of view. The most interesting thing would probably be my sister though; because obviously my mom and dad had her and I, yet I got the bad gene and she didn’t. She’s been running and playing sports for years, and she’s really good at it. So as you can see, I’m still working on the documentary and deciding what I want to do with it.
Anyways, the reason I am making this documentary is not to show people the struggles of my life and make them feel bad for me; it’s to raise awareness about FSHD and get people to understand what really happens to someone who is affected by it. When people think of Muscular Dystrophy, they usually think of Duchenes, because that is the most severe form of MD and it’s life threatening. Like I said, I just want people to be aware of FSHD and not be in the dark. I am so excited about finishing this documentary and I actually made a trailer for it. Here is the link: https://www.youtube.com/watch?v=Qpd7IcW4HuE