[Congressional Record Volume 152, Number 114 (Thursday, September 14, 2006)]
[Senate]
[Pages S9627-S9628]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                     CRANIOFACIAL ACCEPTANCE MONTH

  Mr. PRYOR. Mr. President, I rise today to call attention to the fact 
that September has been designated as Craniofacial Acceptance Month. 
Craniofacial abnormalities are abnormalities that affect the skull and 
face. According to the National Institute of Dental and Craniofacial 
Research, ``craniofacial defects are among the most common of all birth 
defects. These disorders are often devastating to parents and children 
alike. Surgery, dental care, psychological counseling, and 
rehabilitation may help ameliorate the problems, but often at a great 
cost and over many years.'' Victims of craniofacial anomalies usually 
have to endure many expensive procedures throughout their lifetimes, 
the costs of which can add up to cost millions of dollars.
  Facial deformities give their victims a variety of aesthetic and 
developmental problems that differ in severity and occurrence. The 
common condition, cleft lip, an abnormality where the lip does not 
completely connect, can vary from a simple disconnect to a gaping 
opening that goes from the lip to the nose. It is easy to understand 
the developmental and respiratory problems this could present. 
Fortunately, this condition can usually be corrected through one or two 
simple reconstructive surgeries. But what about other anomalies that 
are not as easily corrected like craniosynostosis, a condition where 
the soft spots of an infant's skull close too early, hindering normal 
brain and skull growth? Or Goldenhar syndrome, where one side of the 
face is underdeveloped affecting the mouth, ear and jaw? Unfortunately 
these do not represent the most severe or rarest craniofacial defects.
  At only 10 months old, Wendelyn Osborne, who grew up in the small 
town of Ashdown, AR, was diagnosed with Craniometaphyseal Dysplasia, or 
simply CMD. CMD is a rare affliction which affects only 200 people 
worldwide and was depicted in the 1985 movie ``Mask'' starring Cher. 
CMD involves an overgrowth of bone which never deteriorates. This 
caused, in her case, an abnormal appearance, bilateral facial paralysis 
and deafness. Other cases can include those characteristics as well as 
blindness and joint pain. Yet despite the challenges she has faced, 
Wendelyn's life has truly been blessed. Her life expectancy was only 14 
years at birth, but after 17 reconstructive surgeries and two hearing 
aids, Wendelyn is still alive today at the age of 40. It was not until 
2003 that Wendelyn was able to meet and interact with other people with 
craniofacial conditions. She attended the Annual Cher's Family retreat 
and was introduced to CCA, the Children's Craniofacial Association. 
Wendelyn saw the impact of support and encouragement through the 
programs and the families associated with CCA, and has been active with 
the organization ever since.
  CCA has designated September as National Craniofacial Acceptance 
Month in hopes of raising awareness of individuals with facial 
differences. It is not a secret that appearance plays a key part in how 
individuals are accepted in our society. People with facial 
differences, in addition to medical problems, have a much harder time 
adjusting in society and developing successful relationships. Such 
individuals have to deal with a series of consequences that arise from 
uncontrollable circumstances of their birth. Marking September as 
National Craniofacial Acceptance Month brings attention to an issue 
that can no longer be ignored.
  Hopefully, by raising awareness of craniofacial defects, our larger 
society will begin to show understanding and acceptance of those who 
live with these physical, medical, and emotional challenges. 
Understanding and increased

[[Page S9628]]

public awareness of craniofacial disorders and abnormalities would let 
people like Wendelyn Osborne and hundreds of thousands of innocent 
individuals know that they are not unwanted and not alone in their 
battle with craniofacial conditions. I would like to commend CCA on 
taking an important step to raise awareness about this issue. I join 
the Children's Craniofacial Association in looking forward to the day 
when our Nation will ``look beyond the face, to the heart within.'' I 
salute the Children's Craniofacial Association, Wendelyn Osborne, and 
all of the children and adults who live with these challenges and the 
families and persons who support them.

                          ____________________