National Foundation for Ectodermal Dysplasias

$0 Total Raised

$3,000 Goal

Registration
Registration Time: 8AM       
5K Starting Time: 9AM   
Activities to follow until Noon


We are hosting this event in honor of our son, Alex, who was diagnosed with

odonto-onycho-dermal dysplasia syndrome. Odonto-onycho-dermal dysplasia is a form of ectodermal dysplasia characterised by hyperkeratosis and hyperhidrosis of the palms and soles, atrophic malar patches, hypodontia, conical teeth, onychodysplasia, and dry and sparse hair. 

Literally translating the medical terms it means nail-tooth-skin cell abnormality. 

Hyperkeratosis is the thickening of the outer layer of skin. In Alex's disorder this typically happens on the palms of the hands and soles of the feet and can be very painful as large patches of skin come off. 

Hypodontia is absence of teeth. Alex has all of his baby teeth and it remains to be seen if he has adult teeth. 
Onychodysplasia is abnormal cell growth of the nails. Alex does not seem to have any nail abnormalities so far. 
Hyperhidrosis of the palms and soles means increased sweating in these areas. We have not noticed a lot of sweating on his palms or soles but this may change as he ages. Unfortunately, he does not sweat anywhere on the rest of his body. 
Another feature of this disorder that Alex has is a smooth tongue. He does not have the normal fungiform papillae, but his sense of taste does not seem to be altered.
 

Alex is a spunky little 3 year old and doesn't let ectodermal dysplasia define him. He is active and loves to play. Please come out and join us in our efforts to raise awareness and funds for those like Alex who are affected by ectodermal dysplasias. We love the National Foundation for Ectodermal Dysplasias (NFED).

Thank you for your generosity and support. The Carroll Family

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