Imagine going years, maybe even decades, without meeting another person who shares your diagnosis. Now imagine picking up the phone and hearing a friendly voice say they’ve been there, too.
That moment is exactly what the Family Liaison Program was built to create.
Families coming together to help each other is how the National Foundation for Ectodermal Dysplasias (NFED) came to be in 1981. One mom, Mary K. Richter, went in search of other parents who could help her understand what to expect for her son, who is affected by X-linked hypohidrotic ectodermal dysplasia (XLHED).
That important work continues through the Family Liaison Program, an integral part of the NFED’s mission. Our team of 15 liaisons and staff have spent a great deal of time this year leaning into our mission statement and identifying new ways to engage our community.
You may have connected with our liaisons in one of our Facebook groups. Maybe you met one at the Family Conference. Or perhaps a liaison called you to chat because you’re a new family. Maybe you’ve never connected with a liaison at all or know what they do.
Here are the top seven reasons how a family liaison could help.
1) Offer a listening ear
Liaisons are volunteers who are either adults affected by ectodermal dysplasias or parents of affected children, so you can talk to someone who understands without having to explain the basics.
Beth Orchard became a family liaison this year. A writer, coach, and spiritual director, she lives in the west suburbs of Chicago. She and her son are affected by XLHED. After attending her first Family Conference in 2017, she has become an advocate for her family and others with ectodermal dysplasias.
“I love to support families who are experiencing the mental health challenges of medically complex kids as well as neurodivergent parents and their families,” Beth said.
“I’m ready to help anyone by listening, offering support and sharing the journey together knowing we are stronger in community.”
2) Reassure you that you’re not alone
Many people have never met anyone else affected by ectodermal dysplasia. A liaison can be that first connection.
If your child is affected by ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome, reach out to Ann Geiger. She is a new family liaison but has been a part of the NFED since 1999. Her daughter, Greta, is now an adult affected by EEC and has been through many surgeries. Ann is happy to talk about that journey, and she especially wants to connect with families in Louisiana. With a background as an educator and reading specialist, Ann is a natural communicator and organizer.
“I want to make sure that they have all of the love and support they need to navigate this journey,” Ann said.
3) Share practical, real-life advice
Liaisons can pass along what has worked for them, from everyday challenges to navigating medical and dental care.
Sam Hicks became a liaison last year. Affected by XLHED, the Idaho resident can’t sweat but has built a career as an electrical apprentice, often having to work outside in the heat.
“I want to talk to people about how you don’t have to change your lifestyle because of this condition,” Sam said. “You can absolutely live a normal lifestyle if you learn ways to advocate for yourself and communicate with others.”
4) Match you with someone who shares your experience
You can contact a liaison in your state who is affected or has a child with your syndrome. Liaisons represent anykyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome, EEC syndrome, Goltz syndrome, HED, WNT10A-related disorders, and others, so the advice fits your situation.
Meet Lucy Davies. At 28, Lucy joined the family liaisons this year. A registered nurse, she lives in Baltimore, Maryland with her fiancé, Kevin, and her dog, Amy. Lucy has a WNT10A-related condition, and grew up with missing teeth, decreased sweating, and fine hair and nails.
If you or your child have been diagnosed with this newer type of ectodermal dysplasia, connecting with Lucy may help. She brings a young adult perspective combined with professional clinical expertise as a nurse on a craniofacial team.
5) Point you to NFED resources and services
Liaisons help families find educational materials, programs, and support, so you don’t have to search for them alone.
Jack Kriz serves on the NFED Board of Directors and is a family liaison well versed in all things NFED. He can connect you with the right program or article to meet your needs. You may know this Oregonian for riding his bike to Family Conference to raise money and awareness. The retired architect is affected by EEC syndrome.
“To be a part of the NFED was purely an emotional response,” Jack said. “After 50 years of being ‘alone’, I have found so many brothers and sisters in EEC.”
6) Help you see what the future can look like
Hearing from adults affected by ectodermal dysplasia or parents of grown children, can show what’s possible. Some liaisons have been involved with NFED for decades.
You may want to connect with Virginia Higgins, a writer, pastor, ministry coach, and homeschooling mom who is affected by AEC syndrome. She was five years old when her family helped found the NFED in 1981. Now, she’s the mom of an affected young adult.
“Growing up, there were a lot of people who made it their mission to make me feel like I didn’t belong, but with the NFED, I always belonged,” Virginia said. “And that had a lasting impact. People like Mary Kaye, Beverly, Jodi, Kelley, and Malinda, who saw what others couldn’t (even me, sometimes) – beauty, value, and potential and would even hand me a microphone. And when our son was born affected and I sent a desperate email, being on the other side of the table, now a parent with a child affected, the compassion that came back with a ‘you’ve got this, Momma!’ The NFED is family. And if I can help one affected individual feel seen, beautiful, and valued or help one parent feel equipped and capable, then I’ll keep coming along for the ride.”
7) Connect you to the wider community and events
Liaisons help raise awareness and encourage participation in NFED events, like the Family Conference, where families can meet in person.
Janet Johnson is an NFED veteran who has served as a family liaison since the program began 20 years ago. Her adult son, Alex, is affected by XLHED. The Utah family has been involved in the Foundation since 1997 and are Family Conference regulars.
“It made a difference for Alex and us to know there were others out there to talk to and to learn. Wonderful people were met and barriers seemed to disappear for a while whenever we attended a conference. Being a family liaison is easy and important to me.”
Contact A Family Liaison
Whether you’re newly diagnosed, years into this journey or simply looking for someone who understands, our 15 family liaisons are ready to hear from you. They’ve been where you are, and they’re happy to share what they’ve learned. No question is too small, and no one has to figure this out alone. Reach out, say hello and discover the family waiting for you.
Want to become a Family Liaison?
We’re looking for liaisons affected by different types of ectodermal dysplasias and in different areas. Contact me if you would like to volunteer in this role.
Have a question or comment? Contact us.