[Congressional Record (Bound Edition), Volume 147 (2001), Part 9]
[Extensions of Remarks]
[Pages 12619-12620]
[From the U.S. Government Publishing Office, www.gpo.gov]



HONORING THE 20TH ANNIVERSARY OF THE NATIONAL FOUNDATION FOR ECTODERMAL 
                               DYSPLASIAS

                                 ______
                                 

                         HON. JERRY F. COSTELLO

                              of illinois

                    in the house of representatives

                        Thursday, June 28, 2001

  Mr. COSTELLO. Mr. Speaker, I rise today to ask my colleagues to join 
me in recognizing the 20th anniversary of the National Foundation for 
Ectodermal Dysplasias (NFED) in Mascoutah, Illinois.
  The NFED is the only organization in the United States providing 
comprehensive services to individuals affected by the ectodermal

[[Page 12620]]

dysplasia syndromes (EDS) and their families. EDS are a group of 
genetic disorders which are identified by the absence or deficient 
function of at least two derivatives of the ectoderm (teeth, hair, 
nails or glands). There are at least 150 forms of EDS that have been 
identified. EDS was first recognized by Charles Darwin in the late 
1860's.
  EDS affects many more people that had been originally thought by 
Darwin. Today, the number of those individuals affected by EDS has been 
estimated as high as 7 in 10,000 births. Individuals affected by EDS 
have abnormalities of the sweat glands, tooth buds, hair follicles and 
nail development. Some types of EDS are mild while others are more 
devastating. People with EDS have been identified has having frequent 
respiratory infections, hearing or vision defects, missing fingers or 
toes, problems with their immune system and a sensitivity to light. In 
rare cases, the lifespan of a person with EDS may be affected. Many 
individuals affected by EDS cannot perspire, requiring air conditioning 
in the home, at work or in school. Some individuals may have missing or 
malformed teeth or problems with their upper respiratory tract. EDS is 
caused during pregnancy, as the baby is developing. During the 
formation of skin tissues, defects in formation of the outer layers of 
the baby's skin may lead to ED.
  At this time there is no cure for ED. The NFED, incorporated in 1981, 
is the sole organization in the world providing comprehensive services 
to families affected by EDS. The NFED is committed to improving lives 
by providing information on treatment and care and promoting research. 
There are more than 3000 individuals served by the NFED in 50 states 
and 53 countries. They have provided more than $115,000 in financial 
assistance to families for their dental care, medical care, air 
conditioners, wigs, cooling vests and other needs. The NFED has 
provided patient access and granted more than $237,000 to researchers 
studying the various aspects of EDS. These grants have stimulated more 
than 2 million dollars in ED research. They continue to host continuing 
educational programs on ED for health care professionals and provide 
the most comprehensive and current information on ED in the world.
  Mr. Speaker, I ask my colleagues to join me in honoring the 20 years 
of service of the National Foundation for Ectodermal Dysplasias and 
it's aid and comfort to those affected by this terrible disease.

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