Hey there!
My name is Jacob, I’m 27 and have hypohidrotic ectodermal dysplasia (HED). My name may be familiar to a few people; I’ve previously written a series of blog posts about my dental implant experience.
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.
Photography?
Yep! This project will be shot on film instead of digital. I have previous professional experience in digital photo and video work.
Who?
You, hopefully! I am looking for participants with ectodermal dysplasia between the ages of 15-50 (age range is flexible).
Where?
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.
Previous Work?
My previous photo and video work can be seen on my website and on my Instagram (@jacobmoss).
Contact info?
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 edphotoproject@gmail.com.
Hey Jacob,
We live in Charlotte! (Just recently relocated from Charleston, SC). I have 2 boys with HED, my oldest Kobe is 18 and will be attending college at Belmont Abbey. We would love to assist you anyway we can! I will have him email you later today.
Hey Jacob!
I’m in St. Augustine, FL but I get up to NC fairly regularly, especially the Asheville area. Hit me up if you want.
Thanks!
John
Hey John,
Can you shoot me an email at edphotoproject@gmail.com
Thanks!
Jacob
Hi Jacob!
I’m 45, live in Chicago and have XLHED. Was diagnosed around 10, have boy/girl twins via PGD/IVF who are now 10. May be in your area later this summer.
Hey Lisa,
Thanks for commenting! When you get a chancer can you email me at edphotoproject@gmail.com ? Would love to set something up.
-Jacob
Hey Jacob, I’m Chris and I am 21 years old. I was diagnosed at birth with HED. I live in the suburbs of Chicago, IL and I would be very interested in helping you with your project.
Hey Chris,
Happy to hear your interested in being part of the project. When you have send me an email at edphotoproject@gmail.com.
Thanks!
Jacob
Your project is excellent.. I have an 11 year old daughter with ectodermal dysplasia. I am blessed because she is very positive and never see ED as her liability but a gift for she excels in academics and extra curricular activities..
Hey Jacob,
We were at the NFED family conference in Portland and heard you speak about your project. While my grandson is only 9 he was very interested in talking with you and helping out. Please feel fre to contact his father Jon at nukcurv51@mac.com. Thanks for putting forth the effort for this project.
Also, I watched your video, the viaduct, and was very impressed. My brother is an artist in LA and did a photo series on the destruction of the 6 th st viaduct. It is gorgeous. You should look him up it is Lawrence Fodor (LawrenceFodor.com photography). I will be forwarding your video to him as well.
I hope you get all the subjects you need.
Thank you,
Kathy
Hey Kathy!
Thank you for the kind words. I will write Jon an email right now. Thanks again!
-Jacob
Hi. jacob. I have cerebellar dwarfism ectodermal Alopecia/dental ravage and would love to help you.
I’m in Florida, and realize you have probably completed your project. Still new to all of this. 35 years old and was just officially diagnosed
Hi, Brandy. His project is complete. In fact the exhibit opened this week! Thank you for reaching out. We’re glad that you found our site. Have you filled out this form yet at https://nfed.org/join-us/? If not, please take a minute to do so. We will send you information, add you to our email list so you can stay up-to-date and provide you with support. We are here to help! ~ Jodi, NFED, Director, Marketing and Communications