My first memory of the National Foundation for Ectodermal Dysplasias (NFED) is from when I was about eight years old. By that age, I knew I was different, but I didn’t quite understand why or in what way. Apart from my brother, I had never met another kid with ectodermal dysplasia. All that changed when I went to my first NFED Family Conference that summer. Suddenly, I was surrounded by children and adults that looked like me, and I felt a sense of belonging I had never experienced before.
That first memory is what has inspired me to give back and volunteer with the NFED. As I’ve gotten older, I’ve reconnected with the NFED and become more involved by speaking on panels at Family Conference, attending Advocacy Days, being a member of the Development Committee, and, most recently, being selected as a Family Liaison. I aim to help create that same sense of belonging for other children and families.
Getting Involved at Family Conference
Volunteering at Family Conference has definitely been my favorite experience with the NFED so far. I especially enjoyed speaking with the teens at last year’s conference about their dental experiences. It felt like I got to be the mentor I didn’t have when I was going through my treatment. It was so rewarding seeing the teens open up about their experiences and offer advice to each other.
I also really enjoyed being a speaker on one of the Q&A panels. Hearing other people’s questions, along with listening to the perspectives of the other panelists, really opened my eyes to how much knowledge we all have to share.
Sharing our experiences is one of many ways we can help support other families affected by ectodermal dysplasias, and Family Conference is a great place to do it! Volunteering at the conference doesn’t feel like work – it feels like pitching in at a family picnic! There is nothing more rewarding than having a family come up to you at the conference and thank you for all you’re doing.
What Volunteering Has Done For Me
Living with ectodermal dysplasia has definitely shaped who I am, but being a member and volunteering with the NFED has given me the life experiences to choose what defines me.
It has given me the opportunity to use my diagnosis to help others and empathize with their experiences. The NFED gives you the tools and knowledge to help others with ectodermal dysplasia and gives each volunteer the power to make a difference. The NFED truly feels like a family, and volunteering just makes you an even more central part of that family.
Lucy is a guest blogger for the NFED. She lives in Maryland and is affected by ectodermal dysplasia.
Would you like to be a volunteer like Lucy?
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