With more than 430 attendees, the 2019 Family Conference was the third largest conference in National Foundation for Ectodermal Dysplasias (NFED) history! We called in our greatest reinforcements up to Lincolnshire, Illinois to help us prepare for and run the 38th annual Family Conference. Without the hard work and dedication of our volunteers, the conference would not be possible.

Run of Show

Seventy-five volunteers answered our call and stepped up to make sure the conference ran smoothly. They were people of all ages from around the world monitoring the chance auction, manning our Boost the Cure and promotional tables, assisting with set up and tear down, or helping with registration. As they say, there are no small parts in volunteering, only small volunteers.

We are eternally grateful for our volunteer Family Conference Committee. These six individuals worked year round to plan the event with our staff to ensure the best experience possible for our families. Without them, there is no Family Conference.

Dental Evaluations

Several, fabulous dentists and dental fellows volunteered their time and expertise and provided free dental evaluations for attendees. In addition, families helped coordinate these evaluations and guided others through what can be an otherwise challenging process.

Members of our Scientific Advisory Council worked at the dental evaluations with families seeking dental treatment options as well. They were a part of our Ask the Experts session that allowed them to speak directly to members of our community. Also, they met with families one-on-one in and out of workshops about their specific area of expertise throughout the weekend.

Workshops and More

If you attended one of our workshops, then you most likely saw a volunteer host and moderate the talk. Some folks even spoke on family panels or led their own workshops.

Volunteer chaperones guided the teens as they explored local attractions throughout the weekend. A dedicated volunteer made sure they had fun and stayed cool under the Chicago sun by taking them bowling and to the Museum of Science and Industry.

The List Goes On

Families participated in a Type Unknown Study to identify a specific ectodermal dysplasia diagnosis for all individuals on our database. Also, others participated in a research project which measured sweat production.

Our photo studio was filled with volunteers working behind the camera, assisting with registration, and preparing photo releases. We will use the photos from the studio in the upcoming year’s marketing materials.

On behalf of the entire NFED staff, we cannot thank each and every one of our talented volunteers for the hours they so generously dedicated to Family Conference. We look forward to seeing you next year in D.C.

Supporting you, supporting each other. That’s what it’s all about.

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