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The Facing It Together Foundation
What we do:

Children and adults with facial differences need our help. Medical problems that produce an alteration in facial appearance dramatically affect their lives. Whether this change is the result of a birth related disorder or an acquired problem such as trauma or facial cancer, patients with these problems need support. Although not life threatening, changes in facial appearance dramatically alter the way society views and interacts with a person. Our facial appearance is the first impression people in our family and local community have of all of us. When this appearance is altered, so is the reaction of others. Therefore, unlike other medical conditions such as heart disease, liver disease, lung disease, etc., facial disorders dramatically impact the way patients interact with society on a daily basis. 

In our area, one out of every five hundred children born have some sort of facial disfigurement. In addition, one in every thousand adults has some form of facial deformity related to trauma or cancer. Yet in spite of the large number of people affected by these problems, very little is being done to improve their standard of living. There has been no major advancement in the treatment of these problems in over the last decade. In Florida, there is little to no research being conducted to improve the diagnosis, treatment, or prevention of these problems. More importantly, our state is only beginning to help patients and families deal with the fall of these complex problems.
Our mission is to help people with craniofacial differences regardless of age, race, creed, etc. We have adopted a two-prong approach to improving the lives of these individuals. Prong one involves the creation of an endowed fund dedicated to patient and family services. The second goal is to endow a research fund dedicated to treatment and prevention of craniofacial disorders. 

How we do it:

First, we wish to directly support patients and their families. Many patients with facial disorders feel alone. Most do not know of anyone else who is going through the same thing they are and as a result they feel no one else knows or understands their problems. This leads to increased isolation, anger, and misunderstanding about what can be done to improve their lives. In order to overcome this, Facing It Together has developed a family-patient network, which links patients with different facial anomalies. This network allows patients to meet other people with the same problems. Working with Children's Medical Services and linked by email and telephone, our local support groups help patients find out how others have dealt with their deformity. Families learn they are not alone. They develop friendships with others land learn from experience how best to cope with problems that arise from their deformity; whether they are surgical, social, or educational.

The second goal of Facing It Together is to support craniofacial research. Although we have come a long way in terms of craniofacial therapy, we still have many miles to go. We are still incapable of completely normalizing the face of children with complex anomalies. In spite of numerous surgeries, many of these children still carry the stigmata of their original deformity whereas a child with Crouzon's Syndrome still looks like a child with Crouzon's, a Treacher Collins like a person with Treacher Collins, etc. we want to help change this. Already, we are supporting research on the use of virtual reality surgery to better reshape the facial skeleton in these patients in order to achieve "facial normalization". There are projects developing computers that help guide the surgeon in placement of the reconstructed bone. This helps to eliminate the stigmata of the deformity and give the patients a craniofacial skeleton that is appropriate for their age and sex.

Facing It Together also promotes the research that would correct birth defects even prior to birth. Fetal surgery has become a reality for a variety of life threatening, intrauterine disorders. With recent advances, it is now possible to treat and prevent non-life threatening birth defects in the womb. With this type of therapy, disorders such as cleft lip and palate, Craniosynostosis, amniotic band syndrome, and spinal bifida can all be treated prior to birth.
In uterine surgery also offers the advantage of allowing the child to heal its wounds without a scar, using a process more akin to tissue regeneration than classic scar forming wound repair. Many patients with facial differences have their deformity corrected, but are left disfigured by the presence of external scarring. We are supporting genetic research that would teach us how to decrease or eliminate the degree of scarring in these patients, thereby significantly improving their final outcome.

Lastly, we are investing money in research dedicated to disease prevention. We are looking to help characterize the gene responsible for Mobius Syndrome. This disorder, which is characterized by the complete absence of the facial nerves that animate the face. Working together with Mobius families, we are performing a genetic analysis, which should lead us to identify the gene causing the disorder. Once identified, this information can be used to better counsel families and patients with Mobius Syndrome on the genetic risks associated with the disorder.

For more information, please visit The Facing It Together Foundation.

Why we do it:

Thank you for your involvement. Your help is forever changing the lives of our children.

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