NFED Regional Conference in White Plains, NY

Last Saturday I hopped in my (NEW!) car and zoomed down to White Plains. It was a lovely sunny morning, although it was close to 0° F. When I arrived in White Plains, I drove around the block about 5 times before figuring out where the hotel actually was. Way to skimp on signage, Cambria Suites. I reluctantly handed over my (NEW!) car to the valet and turned my attention to the day ahead.

I arrived bright and squirrely and bounded up to the hotel lobby, where I greeted the NFED staffers, Kelley and Lea, and got to work at the registration table. I was soon joined by a very sweet young lady named Cami who helped check people in as they arrived.

Five minutes later I saw my reflection in a mirror and noticed that the tag on my scarf was sticking up. Smooth.

I later saw my reflection in a mirror and noticed that the tag on my scarf was sticking up. Smooth.

Of course I was happy to meet a lot of folks I hadn’t met before, but there were two families coming that I was especially excited to meet.

One was a young couple who had recently found out that their unborn son is affected with EEC. Ultrasound technology for the win! The father, Dennis, had reached out to me via email just two weeks before, after having found my blog. (I’ll write more about that cool story in another post.) I encouraged them to take the trip down from Maine so they could experience the awesomeness of a family conference.

The other family that I was looking forward to seeing was a guy (Sean) with EEC who I had known about from his aunt (Sally), but I had yet to meet in person. A couple of years ago, Sally and I had gone out for coffee and ended up spending something like four hours sitting and talking about life with EEC. Her sister (Sean’s mother) had EEC, so Sally knew all about how it was for someone to grow up with EEC and all of the challenges she had faced. She had been trying to get Sean involved with the NFED, but he had been reluctant. Finally I was going to meet this guy and his girlfriend Sharon!

Back to the conference – the morning kicked off with a heartwarming intro by DeeDee Olsen. Then, Kelley and Lea introduced themselves and spoke about the staff and services the NFED offers. Then, Tessa Field from Edimer gave a talk about the research that Edimer has been doing for XLHED. I found this really interesting, as I have seen Tessa at the last several conferences and I was aware of the XLHED research and treatment progress, but I had never actually sat in on one of the lectures. Tessa is an excellent presenter. She’s able to explain genetics in a way that the average person can understand.

Suddenly it was time for lunch! I made a sandwich and plopped a scoop of what I thought was potato salad on my plate. Sean’s girlfriend Sharon was beside me as we ate and we talked a lot. At one point I put a forkful of the potato salad into my mouth and realized instantly that it was NOT potato salad, but chicken salad. Horrors! Sharon had just asked me a question and was looking directly at me as I desperately tried to decide what to do with the offending meat product in my mouth. I smiled and held up my finger to indicate that my mouth was full. As soon as she looked away I blurted the contents into my napkin. It did cross my mind to chew and swallow, but since I haven’t had meat in so long I was afraid it might cause digestive calamity and ain’t nobody got time for that.

Anyway, talking with Sean and Sharon was really cool. It’s always fun to meet another person with EEC and go through all the stuff that is “wrong” with you, and realize that it’s actually tied to EEC, and that other people with EEC have the same problems.

My newest friends, Sharon and Sean.

My newest friends, Sharon and Sean.

After lunch, Dr. Tim Wright gave an entertaining overview of dental treatment for kids with ectodermal dysplasias. The final presentation was by a doctor who explained genetic testing. It was a difficult talk to follow and unfortunately I think it may have left people even more confused about genetics than they were before. Afterwards, I tried to explain to the others at my table what autosomal dominance is, but I don’t know if I did any better.

That was it for the presentations, and we had some time before dinner to chat. I mostly talked to Sean and Sharon, but I also got to talk with some other people I hadn’t met previously, and catch up a bit with the “regulars”.  A lot of people left at that time, and by the time the pizza was set out for dinner, there were only two tables of people left.

I made sure to grab a slice of pizza that did not contain meat, and I made my way over to talk to Dennis, who I really hadn’t gotten a chance to talk to earlier in the day. By then he had made friends with lots of people, telling them the story of how he and Lindsay found out their son would have EEC. Everyone was really excited that they had found their way to the NFED so early, and I felt a tiny bit of pride that my blog may have been the beacon that helped them find their way.

By about 6pm, everyone was gone and I sat talking with Lea and Kelley for a bit, while a handsome waiter cleaned up around us. We reflected on the day and talked about how we were looking forward to the national conference in Colorado in July. We said goodbyes soon after that, and I headed down to retrieve my (NEW!) car from the valet.

As I waited for my car, I noticed that the valets were actually driving the cars in and out of elevators, and that the garage must have been a floor below us. As I watched, a car emerged from the elevator and scraped it’s side along the edge of the brick wall next to the elevator. My mouth fell open, and as the car drove closer I could see that the other side was equally scratched. I realized that it must have been one of the guys who worked there, but I was rather unnerved at his carelessness. My car finally emerged without any damage and I leapt in and got out of there before anything else could happen. Crazyness!

So in conclusion… if you happen to have a NFED Regional Conference in your area, I highly encourage you to attend (just avoid the valet parking option). It is a great opportunity to connect with more local people, and to find out how the NFED can help you (or perhaps, how you can help the NFED). I forgot to mention this earlier in the post, but they provide a childcare option so that your kids can play and meet other kids while you hang out with the adults.

It was great to connect with new people and to have the opportunity to see some of my longtime NFED peeps in the wintertime. Less than five months to go until the conference in Colorado! Woo!

Photo Credits: Lea and Kelley took the photos and I snagged them from the NFED Facebook Page.

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