by Heather McKelvie
The liaisons are taking over the blog!
We’re planning to use the blog to raise awareness of ectodermal dysplasias and to share our stories and experiences in a place where you can easily search and find topics that are important to you. We intend to promote NFED events (especially the Family Conference), share knowledge, answer questions and promote a positive presence for ectodermal dysplasias on the internet.
Who are the NFED Liaisons?
If you’ve spent any time browsing the NFED website or Facebook page, or if you’ve been to a conference, you’ve probably heard of the NFED Family liaisons. Who are these people and what makes them special?
The NFED Family Liaisons have firsthand experience with ectodermal dysplasias. Either they themselves are affected, or they are the parent of a child who is affected. In some cases, they are both of these things. The liaisons are all volunteers who donate their time and energy to support the NFED, with a focus on welcoming new members to the NFED family. Liaisons are knowledgeable about the services that the NFED can provide, plus they have personal experience dealing with medical professionals, insurance, school issues – you name it!
Our current liaison team is made up of about 20 people, each representing a segment of the United States. The NFED has plans to continue to expanding the team, with the goal of having at least one liaison in every state. Liaisons range in age from late 20’s to 60-something. Some are parents and some are not. We are architects and artists, ministers and teachers, therapists and pharmacists, stay-at-home moms, and everything in between. What unites us is our passion to raise awareness of ectodermal dysplasias and to reach out and help others who are affected.
If you or someone you love is newly diagnosed with a form of ectodermal dysplasias, we are here to help. Whether you want to know more about your syndrome, or about the NFED, or you just need a listening ear; contact a liaison and find out what they can do for you. Visit the liaison page on the NFED website to see the current liaisons and to find one near you or one who is affected with the syndrome you are interested in learning more about.
Becoming a NFED Liaison
Do you think you have what it takes to be a liaison? You probably do! If you are an adult who is affected, or if you have a child who is affected, you’ve already met the first qualification. Are you friendly and willing to lend a helping hand? Contact Kelley Atchison (Kelley@nfed.org) to express your interest and learn more about how you can join the Family Liaison team. We look forward to welcoming you!