Perhaps you have wondered whether or not you should attend a family conference.

Perhaps you have even wondered if there is any lasting value to setting aside three (or four) days in your already overbooked schedule in order to spend time with people you may never have met…

Family affected by AEC

And in response, I say a resounding, “YES!”

I can still remember the very first family conference I went to as a child. It was, in fact, the first ever family conference.

Hi! I am Virginia Higgins, and I am affected by AEC.  There are six affected individuals in my family (myself, my son, my sister, and her three children).  Because I had a sister that is also affected by AEC, I KNEW that there was someone else like me. But at that first family conference, when I met Charlie Richter and JoAnna Daniel-Nix, I realized that there were others out there like US.  See, we (my sister and I) have four older brothers who are about as normal as you can get.  We knew we had each other, but that first family conference opened our eyes to the fact that we were not alone. It was not “US vs. The World” per se.

I remember the tan t-shirts that we got at that conference, that had smiley faces on them and were emblazoned with the words “We can’t smile without you!”  Never a truer word has been printed, because we couldn’t smile without the NFED!

I could go on and tell you about each of the conferences I have attended, but for want of space, I will just tell you what I see as two of the greatest benefits of attending…

  • The ability to network with other affected individuals… lets face it, with a rare disorder, your doctors won’t have all of the answers, but another family may have the answers you need!
  • The ability to network with clinical professionals- both to obtain advice AND to educate them and offer insight.

The fact is, you can’t put a price tag on either of those!  But you get both when attending a family conference.

My reasons for attending family conferences are much different now than they were ten years ago.  I now have a three and a half year old son that is affected, and if he gains even an ounce of the benefit from attending that I have from attending over the years, then what we invest in time/money to attend will be returned one hundred fold.

This is my little guy, at the 2011 NFED Apple Classic Golf Tournament, and he says he would love to meet you at the family conference…

3 year old affected by AEC

So, will we see you there?

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