Chicago proved to be a sweet home for our 38th Annual Family Conference! We welcomed the third largest gathering of families affected by ectodermal dysplasias in history on July 11-13 with 435 people from seven countries attending. It was an extraordinary event filled with new friendships, aha moments, laughter, hugs, and even tears.
Using M&Ms to Teach About Ectodermal Dysplasia
The following presentation is a very simple way to introduce the ectodermal dysplasia to your child’s classmates and teachers. We published this article years ago but it’s still a great idea for parents to use in their child’s classroom. Levi is now an adult who has his own family! By Kim Howard My son’s name…
Things to do in the hotel during Conference
Curious about what you can do during your spare time at the Family Conference. They offer: Business center. Need to work for a few hours while at the conference. Here is what the business center has to offer: Audio/Visual Equipment Rental Complimentary Printing Service Fax Meeting Rooms Photo Copying Service ($0.10) Printer Indoor Pool.Too hot…
8 Things You Should Expect From Your Dental Care Team
The oral manifestations of the ectodermal dysplasias are often complex, and affected individuals might benefit from a team approach to evaluation and planning for treatment. Do not accept all team members as being equally trained and experienced. Ask questions… about the training of key individuals on the team; about the format for team meetings; about…
Key to Best Treatment
By Margaret Bennion Involved parents in their child’s dental treatment helps the children receive the best treatment possible. There are variations of ectodermal dysplasia and they differ from child to child. Numerous health care professionals are involved in their care. Many providers and/or parents give up or get discouraged because it is too difficult and expensive….
Breast Implants
Editor’s note: Lack of breast development is common in certain syndromes of ectodermal dysplasia. We wanted to share a few stories of affected women who experienced lack of breast growth either in one or both breasts. Two of the women interviewed chose to get breast implants, while the other did not. Names and identifying details have…