By DeAnn Huxman
As I anticipate the 2012 National Foundation for Ectodermal Dysplasias National Family Conference in Florida, I’m filled with excitement for the time together with this group, our other Family. My family attended our first national conference in Kansas City in 2005. We had been interested in attending previous years, but were concerned about the overall expense. In 2005, it was within driving distance and we decided it was time to go.
As I was anticipating the event, I thought of the numerous “national” events I’d gone to and the number of people there. I still remember the thoughts and feelings I had as conference was approaching:
- “it’s a national conference so we’ll just be a number in a huge group”
- “hopefully we may learn a thing or two about EEC to feel more educated
- “maybe our son, Tyler, will meet someone else his age with EEC”.
I almost tear up as I think back to approaching the registration table that first day and hearing, “Oh, you must be the Huxman family.” I looked to see if we had our names anywhere on our clothing and we didn’t. These people working for this “national organization” knew who we were before we even introduced ourselves, because they cared enough to take note of the information we’d provided them about our family. At that moment, I knew there was something special about the NFED and staff. I felt it throughout the whole conference and knew that this was going to become an “every year” event for our family. We learned so much that first year about EEC, ectodermal dysplasias, and felt a connection with the organization and staff. We were NOT treated as just a number amongst thousands; we were treated as valued individuals.
That first conference, Tyler did not have a chance to meet another child his age with EEC. He did meet two incredible role models with EEC that both happened to be over the age of 50, Jack and Norma. Looking back, it may have been a true blessing that we were able to see two examples of how fulfilling life can be. Thanks Jack and Norma, for setting an incredible example for others to witness and follow.
Our second conference, in 2006, is where Tyler was able to meet others his age and younger with EEC and other ectodermal dysplasias. He now refers to his “best friends” that he looks forward to spending 3-4 days with each year at conference.
The same is true for us as parents, we love going to conference each year and reuniting with our NFED friends. We usually go a few days before or stay longer after to spend more time together. The connections, relationships, and lifelong friendships we’ve made at conference have had a very positive impact on our entire family, not just those affected by ectodermal dysplasias. In a sense, travelling to conference each year is like attending a “family gathering”. Florida this year will be our 8th conference in a row.
As a family, we’ve made a decision to incorporate our vacations with conference. This way we can all benefit from the connections we’ve made through the NFED as well as enjoy family time together in different parts of the US each year. Each year, the goodbyes at the end of conference are very difficult, but as a dear NFED friend of mine often says, “Don’t cry because it’s over, smile because it happened.” The memories we make each year keep us going until the next year when we’ll see everyone again. Each year I look forward to going back and meeting new families and making new connections.
Hope to see you in Florida.
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