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National Foundation for Ectodermal Dysplasias

Being diagnosed with a rare genetic condition like ectodermal dysplasia can make a family feel isolated and alone. The National Foundation for Ectodermal Dysplasias (NFED) assures them that someone cares. The NFED is the leading charity in the world serving individuals affected by ectodermal dysplasias, their families, and care providers. Its mission is to empower and connect people touched by ectodermal dysplasias through education, support and research.

The ectodermal dysplasias involve defects in the hair, teeth, nails and sweat glands. Other body parts may be affected such as the skin, eye, parts of the ear, and limbs. The 150+ types are identified by the combination of physical features an affected person has and the way they are inherited. Symptoms can range from mild to severe. Hypohidrotic ectodermal dysplasia (HED) is the most common syndrome and features multiple, malformed and missing teeth, the inability to perspire, and sparse hair. Only in rare cases do ectodermal dysplasias affect lifespan and very few types involve learning difficulties. The ectodermal dysplasias affect men, women, and children of all races and ethnic groups. As few as one or as many as 7 in 10,000 babies are born affected by ectodermal dysplasias.

Proceeds from this book will underwrite the NFED's support, treatment, and research programs. The Foundation publishes high-quality information to empower families with knowledge that their doctors often cannot give. Family Conferences give families the opportunity to network with other affected families, develop mutual support systems, and learn from experienced doctors and dentists. Affected children and their siblings attend Kids Camp where they participate in educational and social activities with other children like them.

When you are missing some or all of your teeth, smiling, eating and talking are not easy. The NFED believes every person deserves a smile. The Foundation works with families to help them understand their treatment choices and get financial help for care. The NFED developed a network of Dental Treatment Centers that offer affordable care from experienced dentists. The Foundation has helped 300+ people with $1.3 million in life-changing care.

Founded by a farmwife with an affected son, the NFED has achieved great strides in research in three short decades. Little to nothing was known about HED in 1981. Today, researchers are testing a treatment that, if successful, will eradicate the symptoms of the condition in newborn males. The NFED has been the catalyst for this research and is excited about the possibilities and hope it holds for families for generations to come.

Treatment and research advancements are critical. Yet, the NFED's biggest accomplishment is simply its existence. The NFED stands with open arms to welcome the family who's just been diagnosed, to answer their questions, and to allay their fears. The Foundation educates families that anything is possible for the person who is affected by ectodermal dysplasia. The conditions come with challenges, but with support and encouragement from the NFED, families can expect a bright future.

To learn more or to donate, visit the NFED's Web site at


Gleannloch Pines Golf Club

Sunday, August 12, 2012

$150 per player includes:

Lunch, dinner, food, and drinks on the golf course, all games including a chance to win a 2012 Acura MDX

Lunch and registration start at 11 a.m.


Raffle, Silent Auction, and Dinner following

For information go to