Get Baking With Cookies for a Cure

Love cookies? (Who doesn’t?) Want to support the National Foundation for Ectodermal Dysplasias (NFED) and spread awareness for ectodermal dysplasias? We have the perfect fundraising opportunity for you — cookies for a cure.

Why Oliver Is Smiling Even Bigger

Oliver wakes up every morning with the biggest smile in the world even though he has only six teeth. He’s affected by hypohidrotic ectodermal dysplasia. Last Tuesday, Oliver received his dentures and he is thrilled! Now his usual big smile is even bigger. In honor of Oliver, his parents, Matt and Vanessa Nehrkorn, recently held…

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…

Animals for Ava: Paying it forward!

By Angela and Dante Puorro   Our daughter was diagnosed with hypohydrotic ectodermal dysplasia at the age of 19 months.  She was born without teeth, sparse hair and underdeveloped sweat glands. I still remember the day vividly. It was six years ago, at 3 o’clock in the afternoon on the Friday before Labor Day.  Ava’s pediatric dentist introduced…

When Life throws you a Lemon, make Lemonade!

By Henry and Catherine Bourgin Twelve-year old Henry is affected by XLHED, as is his mom, Catherine. They live in McLean, VA. Henry would like to share his thoughts on having a lemonade stand with baked goods during summer break: “When I’m at the lemonade stand, we like to talk to each other and when other people come we’ll have conversations….

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