Friday, August 1, 2014

Family Conference

Thank-you, thank-you, thank-you to the NFED for hosting a fabulous family conference. I thought I had researched and knew as much as I could about Brennyn's genetic syndrome, but boy was I wrong. You can never know too much or do enough research.
Brennyn spent three days in Kids camp, which was staffed by local ECE and teachers. The ladies (and gentlemen) were amazing with the kids. Unfortunately, the room was a little tiny for the amount of kids, which made things a little overwhelming for B. Brennyn's helper was so intuitive, she would take Brennyn for breaks throughout the day, and that was without me even mentioning anything.
The kids met some animals from the Columbus zoo, Ronald MacDonald, a fancy magician, etc. To sum it up, Brennyn had a blast! She met a few kids with similar syndromes, which was the main reason for attending the conference.

I was able to meet with a few doctors, a researcher (who has never met anyone with ADULT) and a dental specialist. I sat in some seminars, highlights being school issues, dental, women issues, genetics, etc.

The staff at NFED are tireless supporters of all the NFED families. I have never felt so welcome.

Anyone out there who is effected by ectodermal dysplasia should try to attend at least one family conference. Doesn't matter what country you live in, the information crosses borders!

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