Family Liaisons

We are always looking for volunteers to help. YOU can make a difference today by joining our team of Helping Hands.

The following opportunities are just a few of the areas where you could volunteer. If you don’t see anything that strikes your fancy, let us know. You can also indicate a particular skill or passion on our Volunteer Application.

Are you interested in volunteering? Please complete our volunteer application.

Volunteer Application

Volunteer Opportunities


Become a Family Liaison Volunteer

Family Liaisons are compassionate, caring and understanding. These volunteers are adults affected by ectodermal dysplasia or parents of an affected child. They agree to be available by phone or email to people in their area who are looking for more information about ectodermal dysplasias or the NFED, or who wish to network with individuals in their own region. Please complete the volunteer application to be a family liaison.

Contact Kelley at 618-566-6873 or email her to learn more.

Plan an NFED @Home Event

NFED @Home events are informal get-togethers where families, relatives and close friends of adults and children meet and exchange friendship and experiences. The events are initiated by a coordinator who schedules a date, finds a location and makes arrangements for refreshments. There is no formal program presented, but the NFED provides educational materials to distribute and will invite other families in the area. You just have to get the idea, raise your hand and be the host/hostess. Please complete the volunteer form to be a coordinator.

Contact Kelley at 618-566-6873 or email Kelley to learn more.

Hold an Awareness Event

Most people have never heard of ectodermal dysplasia unless they know a person who has it. It’s up to our NFED community to educate others. Share your story so others can understand the disorder and what life is like for you. You could give a school presentation, speak at your church, host an informational booth at a local health fair or more. The NFED can provide you with educational brochures to distribute. Send pictures and a report following the activity so we can share your success!

Contact Jodi at 618-566-6875 or email Jodi to learn more.

Hold a Fundraising Event

Family fundraisers are a fun way to raise desperately needed funds for the NFED. You’ll need an idea and a group of family or friends to help you execute it. Learn more about how to host an event in your area.

Contact Lea at 618-566-6871 or email Lea to learn more.

Become a Translator Volunteer

Use your bilingual skills to translate important information to affected individuals and families needing NFED services. Complete the volunteer form for this position.

Become an Advocacy Volunteer

The community needs your voice to help advance research, facilitate treatment development and improve access to quality medical care and innovative treatment options. See how you can become an Advocacy Volunteer!

Become a Conference Volunteer

The NFED always needs volunteers for our Regional Family Conferences and annual Family Conference . We need people to work registration, sell NFED items, facilitate support sessions, put up signs, guide people to the right places and more. Visit the Family Conference to sign up for specific jobs and times for each event.

Internship and service hour opportunities are also available. Contact Lea at 618-566-6871 or email Lea to learn more.

Earn The President’s Volunteer Service Award


The President’s Volunteer Service Award is the premier volunteer awards program in the United States. It encourages citizens of all ages to live a life of service through presidential gratitude and national recognition. The NFED is an official certifying organization for this prestigious volunteer award. The ability to bestow presidential recognition to our volunteers is a tremendous honor. We applaud your commitment to volunteer service.

Learn more about the program and how you can participate.

Why Others Volunteer for Helping Hands


Why I Volunteer for NFED: My Son and Others Like Him
Who Could Say No to Mary Kaye Richter?
My Life’s Calling

If you have any questions about volunteering, email Lea, or call her at 618-566-6871.