National Foundation for Ectodermal Dysplasias

NFED Portrait Sessions

At the NFED, we always need high resolution, good quality photos of individuals affected by ectodermal dysplasias and their families. We especially need photos of teens and adults who are affected. We use these photos for nearly everything we do to tell our story and raise awareness: in our publications and fundraising appeals and on banners and online (i.e. website, social media). To secure the photos we need, we are lucky to have a photographer, John Cooper, who is volunteering his time to take family/individual photos in a studio we will set up in a the Great Lakes V room at the Lincolnshire Marriott Resort during our 2019 Family Conference.

Will you help us build our photo bank by scheduling your portrait session?

Scheduling an Appointment

Participation is completely voluntary. Time slots are limited so it will be first come, first serve. Here's the Conference schedule so you can schedule your session around the workshops and activities you want to attend.

Photo Permission

The NFED will retain all rights to the use of the photos for our purposes. If you have not already signed a photo release when you registered, you will be asked to do so at the time of your session.

What Should You Wear?

Feel free to dress however you wish.


Contact Jodi Edgar Reinhardt at the NFED at [email protected] or 618-566-6875.

Created by:   Jodi Edgar Reinhardt
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Date (mm/dd/yyyy CDT) Location Available Slot
(Fri. 8:30am - 5:30am)

08:30 a.m.

Natalie Merrill
XLHED Carrier, mosaicos, left side affected

08:45 a.m.

Caroline Ruhl
Amelia Ruhl+family

09:00 a.m.

Lindsey James
Lindsey & Keegan James

09:15 a.m.

Michael Roberts

09:30 a.m.

Beth Orchard
Beth with Liam

09:45 a.m.

Ryan Murphy

10:00 a.m.

Kristalyn Pittman

10:15 a.m.

Randi Walker

10:30 a.m.

Kristen Hoppough
Whole family

10:45 a.m.

Kathy Daniels
Olivia Daniels

11:00 a.m.

Julie Carroll

11:15 a.m.

Matt Vanni
Hudson Vanni and Family

11:30 a.m.

Leôn Penunuri
Be ready to be amazed by Leon! Here comes the showman!

11:45 a.m.

Amy Coleman

12:30 p.m.

Jennifer Young
Myleia Young and Family

12:45 p.m.

Camilla Doyle

1:00 p.m.

Rebekah Parrish
Mason and Family

1:15 p.m.

Erin Nawrocki
Ava Nawrocki- ADULT Syndrome (parents also if needed- not affected)

1:30 p.m.

Diane Carlson

1:45 p.m.

Addison Kemper
Pippa Kemper & Family

2:00 p.m.

Juanita Trujillo
Whole family 2 boys affected

2:15 p.m.

Priscilla Reyna

2:30 p.m.

Sheila Aumann
Bennett and family

2:45 p.m.

Trisha Stoller

3:00 p.m.

Tracy Reeder
Emily & Matilynn Reeder & family

3:15 p.m.

Jonathan Weil

3:30 p.m.

Crystal Nieman
Nieman family

3:45 p.m.

Kim Crenshaw

4:00 p.m.

Shannon Birnbaum
Michael Farrar

4:15 p.m.

Brycen Wiilingham

4:30 p.m.

Elanne Medeiros

4:45 p.m.

Rose Grindrod

5:00 p.m.

Denyse Shimchick-Millitello
Denyse Dyllan Danielle & Delores Shimchick

5:15 p.m.

Lisa Schroeder
My Daughter Sydney Schroeder
(Sat. 8:30am - 5:30pm)
Great Lakes V Room, Lincolnshire Marriott Hotel 

10:00 a.m.

Sabrina Mojica

10:15 a.m.

Melissa Pierce
For son, Barron Keller Pierce

10:30 a.m.

Virginia Higgins
Individual (Zane, Virginia)

10:45 a.m.

Sara Gilbert
William Gilbert

11:00 a.m.

Vinesh Parekh

11:15 a.m.

Shannon Brown
Erin Brown

11:30 a.m.

Lauren Gabay
Gabay Family

11:45 a.m.

Stacey Burns
Tessa Burns

12:30 p.m.

Christy Heldman

12:45 p.m.

Iris & EJ Torviso

1:00 p.m.

Suzanne Brown

1:15 p.m.

and family

1:30 p.m.

Sherill Scheiblich
Frankie Scheiblich

1:45 p.m.

Thomas Abbott
Abbott Family

2:00 p.m.

Christina Kluzek
and family

2:15 p.m.

Franki Sebock
sebock family

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