Family Conference volunteers Nicole and John Cooper have a passion for the National Foundation for Ectodermal Dysplasias (NFED) community. They hope to bring special talents and strengths to our foundation to truly make it whole. They want to bring diversity with some of their hobbies and career experience, which may have been a gap previously.

John has worked in the IT field at Monsanto Company for 12 years. He’s always happy to share his knowledge with staff and help guide us on our IT projects. We appreciate his ability to explain complex terminology in ways that us laypeople can understand! From 2015-16, John served on our Website Committee. His expertise was greatly valued when we designed and built an entirely new website last year.  For more than a year, he reviewed proposals from vendors, discussed various options at length and guided us at every step in the process. This year, John is working with us on upgrading our server and making sure things like backups and performance are all running smoothly for the office.

Interestingly, John just isn’t a tech guy. He has a creative side, too! With a degree in photography, John has served as the portrait photographer at the Family Conferences for the past two years as well. We have captured some great photos of our families with his help.

Nicole is a teacher and science, technology, engineering, and math (STEM) coordinator at Visitation Academy of St. Louis.  She volunteers for the NFED as a chaperone on the Family Conference field trips. John is able to use his love for photography.

“It is important to have a voice for these young kids and bring about awareness,” said Nicole. “Being aware of who makes up your community is so important. Volunteering allows me to do that.”

John said, “I was so touched by how much courage and strength the families, children, and community affected by ectodermal dysplasias…..I felt privileged to be part of such a great organization.”

Helping the NFED is a family affair for Nicole and John. Nicole’s mother, Mary Fete, is the NFED Executive Director, and her dad, Dr. Tim Fete, has served on the Scientific Advisory Council for more than 20 years. The Coopers love to bring their children Johnny, 8, and Caitlin, 7, with them to the Conferences. Nicole wants to help her children understand the diverse community in which they live.

John taking portraits at the 2016 Family Conference.

The Coopers recommend volunteering with NFED to everyone who is able. Future volunteers can expect to feel welcomed as part of a family.

“It (volunteering) made me aware of something bigger and greater. I use my talents to help others.” – Nicole Cooper

“Volunteering has taught me how truly wise some children can be. Listening to some of the affected children tell their stories and how they cope with their struggles, teaches all of us how we really should be looking at our own lives.” ~ John Cooper

Nicole has been able to use the lessons she has learned at the past two Family Conferences in her personal life with her children and in the classroom with her students.

They are a wonderful asset to our NFED volunteer team and we thank them for all that they do!


Editor’s Note: If you would like to volunteer, learn about what opportunities are available and how you can sign up.



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