By Russell, Janet and Alex Johnson

Why attend the National Foundation for Ectodermal Dysplasias Family Conference? Well, first of all, who doesn’t like the tiny soaps and lotions at hotels?

Seriously…Why attend? I think the question should be “Why not?” From rookie attendees to veteran attendees, there is something for everyone!

Let us give you some of our thoughts and opinions as we (sometimes all four of us, or three of us, or just Alex and Janet) have attended various conferences starting back in 1998 and hoping to show up this July for the 40th anniversary celebration of this wonderful organization:

  1. Acceptance – This is huge! It might be very overwhelming, especially emotionally, to attend your first or second conference, but trust that bonds will be built. There are no barriers with people at the conferences as you can talk and ask about anything with no judgment, just listening ears. Soak up as much as possible.
  2. Education – You have the opportunity to hear and learn from many medical and dental experts. The Scientific Advisory Council is a huge part of the conference’s function and purpose. They will give you a wealth of information and answer your questions or direct you to the source or product that is best for you.
  3. Service – You get to meet the NFED staff, people who truly care about you and your needs. They want to help, and they want to get you involved. These people are genuine gems, and they are very passionate about what they do.
  4. Kids’ Camp and Teens Program – What a great place to meet new friends that you already have things in common with and can understand you. It is comforting to kids to see others that look like them and have similar challenges in life. Sometimes these new friends become lifetime friends and you look forward to seeing them each summer at conference.
  5. Community – We all want the best for our people, and this is a place that family-like relationships are made. You get to meet others whose lives are somehow affected by ectodermal dysplasia and you can talk about how you all go about the day-to-day existence of handling what needs to be done. You are now part of the NFED family = inclusion is a blessing!
  6. Research – Often times, there are opportunities to participate in research. The ectodermal dysplasias are so much bigger than we know in our own little worlds. Research might help us directly in the future, but it definitely will help other generations to come. You can be a part of that.
  7. Voices – Need we say more about all the numerous volunteers that are trying so hard to get legislation passed by Congress so that health insurance will do what it is supposed to do for our people? Learn more and speak up in your state – we need you!
  8. Family Fun – From the pool party to meals together, to the chance auction or late night chats with others, it is such a wonderful few days that you won’t want it to end! We know our oldest (Taylor – not affected) always thoroughly enjoyed his time with all the ectodermal dysplasia affected kids and other non-affected siblings. His first time attending, he said something like, ‘There are so many little Alex kids running around.’

So, whether a rookie or a veteran or someone in between, if you sat down to make a pro and con list regarding attendance of the Family Conference, the pros would win by a long shot! We were rookies once, and the veterans at that time gave encouragement to us stating that things would be okay. If you desire to hear that, come! If you are a veteran and need to share that same encouragement with others, come do just that!

In closing, we must add this informative quote by our son, Alex Johnson (25 with HED), as he is very insightful.

Alex’s Viewpoint

“I would say there’s a couple points to make:

From the kids’ perspective, it’s mostly about that community aspect and being around others in similar situations. Kids camps are largely just a way to keep them busy while the parents are doing other sessions. But the take away for the kids will be that there are others like them still managing and thriving through it all. Even if it’s only a subconscious thought, that’s something that will stick, for the entire family that attends.

From the parents’ perspective, you learn that every other parent is working through the same scenarios of care. Other parents can provide names of products and remedies that work best for them. Mostly regarding physical care but I’m sure that all lot of what the parents talk about are social situations as well.

And then of course, all of the experts and medical professionals that come to talk about the research going on behind all of the ectodermal dysplasias.”


Join the Fun This Summer

This year’s Family Conference is in Chesterfield, Missouri (a suburb of St. Louis), July 14-16. Be sure and register by May 25 to get the early bird rates. You can apply to Bev Meier’s Golden Ticket Fund for financial assistance to attend. That deadline is Tuesday, April 1.

Register Now

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