[Congressional Record (Bound Edition), Volume 147 (2001), Part 6]
[Extensions of Remarks]
[Pages 8500-8501]
[From the U.S. Government Publishing Office, www.gpo.gov]



          NATIONAL DAY OF AWARENESS FOR STURGE-WEBER SYNDROME

                                 ______
                                 

                         HON. ROBERT E. ANDREWS

                             of new jersey

                    in the house of representatives

                        Wednesday, May 16, 2001

  Mr. ANDREWS. Mr. Speaker, Mr. Maloney and I rise today to recognize 
today as a national day of awareness for Sturge-Weber syndrome. We feel 
that it is important to recognize this day because Mrs. Karla Priepke, 
a native of Haddon Heights, New Jersey and resident of Sandy Hook 
Connecticut, brought her son's plight to our attention. Her son is 
affected by this disease and rather than turn inward she has made it 
her mission to inform and educate members of the society and especially 
the medical community about this disease. This is why we wish to do our 
small part to increase awareness of this disease by submitting this 
Sturge-Weber Foundation press release for the Congressional Record on 
this national day of awareness of Sturge-Weber Syndrome.
  Sturge-Weber Syndrome is a congenital disorder most easily recognized 
by a port wine stain on the face and/or body. No one is sure how or why 
it occurs. Babies born with Sturge-Weber can suffer from any or all of 
these complications: glaucoma, blindness, seizures that range from mild 
to the need to remove half the brain, mental retardation, and 
paralysis. The port wine stain often elicits rude stares and 
outrageously intrusive remarks from the public.
  The Sturge-Weber Foundation (www.sturge-weber.com) is establishing 
May 16, 2001 as the second national Day of Awareness for Sturge-Weber 
Syndrome. People will make a donation to the Foundation and wear a 
Sturge-Weber sticker on May 16th. They will receive a packet of 
information about the syndrome and the work of the Foundation so they 
can answer questions from colleagues and friends.
  The Sturge-Weber Foundation was created in 1987--the result of 
tenacious parents who refused to accept that all that was known about 
Sturge-Weber were three paragraphs in medical textbooks. Through 
Herculean volunteer efforts, the Foundation support group

[[Page 8501]]

started. Their outstanding web site links families all over the United 
States and in many parts of the world. The Foundation seeks to improve 
the quality of life for individuals with Sturge-Weber Syndrome by 
acting as a clearinghouse for information, providing emotional support, 
and facilitating research. A minuscule 8 percent of funds taken in goes 
towards administration. The rest, including what's collected for the 
National Day of Awareness, goes directly to education, emotional 
support and research.
  The Foundation has attracted the attention and respect of a dozen 
teams of scientists who are tackling the question of how Sturge-Weber 
occurs from different angles Klippel-Trenaunay is a related syndrome in 
which port wine stains on limbs extend to muscle tissue and bone 
affecting circulation and mobility. Most children with port wine stains 
have neither Sturge-Weber Syndrome nor Klippel-Trenaunay. Of course, 
these can cause dermatological complications as the child matures.
  Sadly, the culture in the United States overemphasizes the importance 
of physical beauty which adds to the emotional burdens of children and 
adults with Port Wine Stains, Klippel-Trenaunay, and Sturge-Weber. The 
Foundation has made progress in research and is determined to press on 
to find out everything they can about this family of syndromes.

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