Mission: To connect, educate
and support the global community of people with Treacher Collins
syndrome by providing medical and networking resources, while
imparting to our children the strength, courage and importance
of not allowing a facial difference to define who we are.
Treacher
Collins:
Treacher Collins syndrome is
a genetic craniofacial syndrome that is characterized by a range
of distinctive facial anomalies. The main characteristics
of TCS are downward slanting eyes, small lower jaw, and malformed
or missing ears. These anomalies cause hearing, breathing,
and eating problems. Individuals and families also struggle
with the psychological aspects of having a facial difference.
About 1 in every 10,000 babies is born with TCS. For
more information about Treacher Collins syndrome and to view
personal experiences of people with TCS, please visit Amie's
site at: www.treachercollins.org.
Vision: Each event is
essential in many ways; not only is it important for people
with TCS to meet others like them, it is equally important to
network about medical doctors, procedures, and hospitals. The
TCC will organize at least one yearly event to bring together
those with TCS and their families.
History: Five volunteers
founded the TCC in 2001 as a result of successfully organizing
the first TCS retreat. Over 65 people attended the first retreat
and as a result, we will now have an annual TCS retreat. The
last five years, we have averaged over 100 people attending
each retreat.
DISCLAIMER:
The Treacher Collins Connection is a lay organization intended
to create a forum for people whose lives are touched by Treacher
Collins syndrome. The Treacher Collins Connection is not a professional
medical organization. None of its participants are or are claiming
to be a medical professional for purposes of their affiliation
with the Treacher Collins Connection. Unless expressly stated,
all comments, postings or other communications are lay opinions
and are not intended to be medical advice.
If you or someone in your family has Treacher
Collins syndrome, we hope you can join us for the TCC Retreat
this year. You can learn more about the retreat by emailing
Judy @ judy at tcconnection dot org.
Copyright © 2002-2006
Treacher Collins Connection. All rights reserved.
