Our History & Mission
Facing Maine is our State’s first 501c3 nonprofit to connect, support, and advocate for people and families with children affected by cleft lip and palate and craniofacial conditions. Facing Maine, incorporated in 2016, and is a volunteer-run organization based out of Scarborough and serves families/members around the entire state.
Facing Maine offers a variety of assistance, resources, and programs for people of all ages who have a condition (birth or acquired) which significantly affects the appearance or health of the face. These facial conditions include cleft lip and palate, Pierre Robin Syndrome, Apert or Moebius Syndrome, Port Wine Stain (vascular birthmarks), and any other scarring caused by burns, cancer treatment, severe accidents, or injuries. Oftentimes someone with a craniofacial condition will need special medical treatment or care, sometimes this can be a lifelong process.
In 2011, co-founders, Fran Philbrook, and Amanda Rapier, both mothers of children born with craniofacial conditions formed a small parent support group. They recognized from personal experience the need for an organization like Facing Maine.
Today, Facing Maine has connected with 250+ people across the state to provide support, services, and programs. This number is growing quickly as every year as 25-30 out of 12,600 babies in Maine are born with a cleft or craniofacial condition. In addition, 5-15 children living with a cleft or craniofacial condition are adopted each year by Maine families and another 5-15 relocate/move to the State with their family. There are approximately 350 children enrolled in the Maine Cleft Lip and Palate/Craniofacial Program through the Maine Department of Health and Human Services alone. (The national average for babies born with a cleft is 1 in 600.) This does not include young adults or adults who still may need support or specialty medical care. There is a large community of people in our State that we want to ensure have the treatment, care, and support they need at any phase or stage in their journey. The type of treatment or medical/specialty care is unique for each person. Each person’s journey is different.
For a child born with a cleft lip and palate, surgery and specialty care begin very early. From birth, infants have special feeding requirements and lip and palate repairs can begin as early as four months old. Throughout his or her lifetime, the average child born with a cleft lip and palate can expect to receive multiple surgeries and treatments at the hands of many different specialists, from oral surgeons to speech therapists to prosthodontists. This treatment and care can be costly, especially when families lack health insurance or insurance companies fail to cover all their expenses. Many families in Maine have to travel a great distance multiple times a day, week, month, or year to receive care from specialists. This can be burdensome financially (travel expenses, time off work) as well as taxing emotionally and mentally for the entire family.
Facing Maine’s goal is to ensure that every person living in Maine who has a cleft or craniofacial has the resources and support they need. That they are treated with equality and respect. Facing Maine provides a connection for families and individuals through a support group and special events. We are also working to provide financial assistance to those with the costly expenses associated with craniofacial disorders.
Facing Maine seeks to dispel the negative social stigma and misinformation about craniofacial conditions still so prevalent today by spreading awareness and advocacy of these conditions through education and community outreach, especially within Maine’s schools, workplaces, and community centers.