This is where you come in, I am looking for volunteers!
I am a graduate student at Duke in Durham, NC pursuing a degree in documentary arts. For my thesis, I am putting together a photography-based project focusing on individuals with ectodermal dysplasia, myself included. I am interested in exploring how living with ectodermal dysplasia affects personal identity.
Growing up with ectodermal dysplasia affected how I thought of myself and how I related to others, both in positive and negative ways. These are things I haven’t necessarily shared before so I’m curious to hear other people’s stories and experiences in addition to my own.
I’m looking for folks in the age range of 15-50ish who are willing to spend a few hours chatting and taking photos with me. My goal is to make images that highlight the diverse mix of individuals who have ectodermal dysplasia. The project is more about people who happen to have ectodermal dysplasia rather than a project about ectodermal dysplasia as a condition.
I am based in North Carolina and will be travelling extensively by car later this summer to work on the project. I will be at the National Foundation for Ectodermal Dysplasias (NFED) Family Conference in Portland in a few weeks, not so much to take photos but to make connections and to talk about the project.
I would love to hear from you! Below are some fast facts about the project, links to some of my previous work and a way to contact me. I look forward to hearing from you!
What is the project?
This is a photography project consisting of portraits of individuals with ectodermal dysplasias.
Yep! This project will be shot on film instead of digital. I have previous professional experience in digital photo and video work.
You, hopefully! I am looking for participants with ectodermal dysplasia between the ages of 15-50 (age range is flexible).
I come to you, assuming you are in the United States. I will be travelling this summer and if the summer doesn’t work out, we can work out another time.
What does participating entail?
It will vary from person to person but generally we will agree upon a location, your house or another place local to you. After I show up, we’ll spend some time talking and getting to know each other. Afterwards we’ll shoot some photos. Time commitment will be about a half day.
How will the photographs be used?
The project will become an in-person photo exhibition in Durham, NC in April of 2019. I may produce a photobook and/or have the images featured in additional exhibitions.
Who am I?
I’m Jacob. I am a 27-year-old Duke graduate student originally from Los Angeles. My family has been involved with the NFED since I first was diagnosed with HED when I was 18 months old. I enjoy burritos, baseball, music and taking photos.
My previous photo and video work can be seen on my website and on my Instagram (@jacobmoss).
I have an email address for this project. If you are interested in participating or have any questions at all please don’t hesitate to shoot me an email at firstname.lastname@example.org.