I spent a good part of Sunday walking around Portland, Ore. and reflecting on the 2018 National Foundation for Ectodermal Dysplasias (NFED) Family Conference. People passing me likely thought I was in another world. I was smiling and laughing as I strolled along the river walk. One person stopped me and said, “Wow! You must be thinking of something special.” I answered, “Yes. In fact, I am thinking of my NFED family.”
Several words come to my mind when I think of our time together: love, laughter, friendships, tears, overwhelming, fantastic, fun and informative.
I am sure you can identify with those words. But perhaps the best word is “family.” Supporting you; supporting each other.
Typically, when we head to the west coast, we have fewer attendees. But, we’re thrilled with this year’s turnout. Two hundred forty-three people attended the conference in Portland with seven types of ectodermal dysplasias represented (ankyloblepharon-ectodermal defects-cleft lip and/or palate syndrome – 3; Clouston syndrome – 1; ectrodactyly-ectodermal dysplasia-clefting syndrome – 12; Goltz syndrome – 6, hypohidrotic ectodermal dysplasia – 69; Schopf-Schulz-Passarge’s syndrome and oculo-dental-digital syndrome – 1). We had families from 23 states, two countries, and Washington D.C.
We learned a lot about genetics, dermatology, ophthalmology, and dental concerns. We are grateful to local experts who volunteered to teach us about 504 plans. They taught parents how to advocate for kids in the school setting to make life a little easier for our kids.
We could have spent hours in the family panel session as we had lots to share with each other. Perhaps we need to extend that session at next year’s conference. Our experts were readily available for consultation and one-on-one questions. Our dentists completed 44 dental evaluations. Where else can you talk to doctors and dentists who actually know something about the ectodermal dysplasias, ask questions and do so for free? Nowhere! Families were wise to take advantage of this amazing opportunity.
BUT, in my opinion, the best part about the conference and the best word to describe the conference is “family.” New families bonded with families who had been to several or many conferences. We welcomed back our “old” friends and welcomed our “new” families. We made friends that we can depend on and, we developed lifelong support networks. We shared our stories and we learned from other families. We laughed a lot and cried a bit.
Kids’ Camp was crazy fun! My goodness, there’s just nothing better than seeing the kids’ smiles and their loud giggles. What a great time they had. They dressed up as superheroes, complete with shields and capes, and had fun running around the DoubleTree. The kids simply did not want to leave. Just look at these pictures and ask any of the kids who attended. Just bringing them together and letting them have fun is as important as any educational session we offer.
The teens were busy in Portland! They toured the Nike factory and Bonneville Dam on Friday and went to Oregon Museum of Science and Industry on Saturday. They had a fantastic time and made new friends, too.
We are family. We learned that we are not alone, and never will be again. We are all part of the NFED family, the ectodermal dysplasias community. Remember that your family is only a phone call away.
Thank you for sharing your time with us. I loved meeting and talking with you.
If you were unable to attend, I hope you will consider Chicago in 2019. We have already started planning an amazing conference for you.
Join me in thanking the Family Conference planning committee, Kelley Atchison, Jack Kriz, Matt Nehrkorn and Carrie Conklin. Also a special thanks to all of our speakers. Kudos to all of the NFED staff members who worked so hard to make this conference such a success.
Our sponsors are key to helping us underwrite the event. Thank you, Louis J. and June E. Kay Foundation, Straumann Corporation, Straumann USA, Sandy Family Dentistry, Mildren Design Group, PC, GeneDx, Inc. – BIOReference Laboratories, Schiedler Family Nursery, Inc., and the Louis and Gladyce Foster Family Foundation.
Until we meet again! But please don’t wait a year to touch base. Please feel free to contact me by phone or email any time. I would love to hear from you.
To see more event photos please visit our Facebook Photo Album.
Please view our wrap up video.
Hugs and my love to all of you. See you next year in Sweet Home Chicago!
So grateful we were able to attend our first family conference and connect with other families affected by ED. You all are simply WONDERFUL and we are already looking forward to meeting more families, and seeing our new friends again in Chicago!
Once again, I am so thankful for the NFED staff and the team from Oregon who put together another great conference. We look forward every year to reconnecting with families and to meeting new families. It is wonderful seeing them experience the feelings and emotions I experienced during our first conference when I realized we truly are not alone in this journey. The Family Conference is a highlight of Christyn’s year; she talks about the one she attended all the way until December when she then switches gears and starts talking about the next one coming up. I love that she is comfortable in her own skin during the few days we are with our NFED family. It is one of the few times she will wear shorts and a short-sleeve shirt. This might not seem like much to some, but just knowing that she is comfortable with those she is with means so much! Thanks again!
It is great to have a gathering of all the young people that suffer from HED. Thank you to the NFED staff for all their efforts. We hope to attend in Chicago in 2019. We hope to see you soon, The Vanni’s
Hi, Matt. Thanks for your kind words for the staff. We are always here to help our families. We do hope to get to see you in Chicago for the 2019 Family Conference! Take good care. Jodi, NFED Director of Marketing and Communications