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Organizations Align to Increase Awareness about Cleft and Craniofacial Conditions

July 9, 2019

Unprecedented effort to educate public about one of the world’s most common birth defects, and the growing number of treatment options available

CHAPEL HILL, N.C — This year, more than 7,000 babies will be born in the United States with a cleft lip and/or palate or other serious craniofacial condition. But the prospects have never been better for these patients to thrive due to advanced medical treatments and interdisciplinary supporting care.

Four leading non-profit organizations that serve these patients and their families -- the American Cleft-Palate-Craniofacial Association (ACPA), Children’s Craniofacial Association, myFace and Smile Train -- are joining forces to educate the public during national Cleft and Craniofacial Awareness Month in July.

“ACPA is excited to join our peer agencies in this unprecedented collaboration to raise awareness about cleft and craniofacial conditions and the remarkable progress we are making in their treatment,” said Bernard J. Costello, DMD, MD, FACS, ACPA president. “During Cleft and Craniofacial Awareness Month, our collective goal is to spread the word about facial difference and the diverse needs and experiences of our patients and the professionals who serve them. Please join ACPA on social media to join the awareness movement.”

“Children's Craniofacial Association celebrates this month by sharing photos and stories from our families, including those who recently attended our Annual Family Retreat & Educational Symposium that was held June 27-30,” said Erica Mossholder, executive director of Children’s Craniofacial Association. “Many children with clefts and craniofacial conditions attend this Retreat for support, education, and networking and throughout July we will share highlights of the event, because we truly believe that "more shares leads to fewer stares," and in turn greater public acceptance of facial and physical differences.”

"As someone who was born with a cleft lip, hearing loss, and no vision in one eye, I was often teased and excluded as a child.  I know first-hand what it's like to live with a craniofacial difference,” said Dina Zuckerberg from myFace. “By serving as Director of Family Programs at myFace, my mission is to raise awareness, educate and give hope to the patients we treat and their families.  myFace has launched its 7th Annual Races for Faces (www.racesforfaces), a walk and carnival, on Sunday, September 15 in New York City where hundreds will come together to show their support for the craniofacial community."

“To show our support for children with clefts and help raise awareness, Smile Train will be participating in many activities throughout the month of July including: our #SmileMaker social media campaign encouraging followers to update their Facebook profile photos with our special frame, our partnership video with BIG Talk promoting deeper conversations about cleft, and our personal stories of impact from our patients and local medical partners around the world,” said Shannon Lambert, Smile Train’s Vice President & Regional Director, Americas & Europe. “We’ve also created a dedicated landing page for the month with helpful information about our efforts which can be found at: smiletrain.org/nccapm.”

According to the Centers for Disease Control and Prevention, cleft lip and cleft palate occur when a baby’s lip or mouth do not form properly during pregnancy. Clefts are one of the most common types of birth defects in the United States and globally, occurring in about 1 in 700 births overall. The causes are not always known, although some cases are linked to genetics and/or environmental factors such as substances that the mother ingests or comes in contact with during pregnancy.

A baby born with a cleft will need surgery within the first year to ensure the best possible outcomes. Otherwise, she may have trouble eating, sleeping, breathing or speaking. Children with more complicated conditions or related syndromes may need numerous surgeries throughout infancy, childhood and possibly into young adulthood.

A typical cleft lip or cleft palate normally can be repaired with one or two procedures. The child’s hearing, speech and dental needs may require additional specialty treatment. Later in life, braces, mouth appliances and additional surgery may be required.

The needs of patients with cleft and craniofacial conditions are complex and make interdisciplinary, coordinated care essential. In addition to a surgeon, treatment may be required from a variety of medical and other specialists including an audiologist, pediatric dentist, orthodontist, geneticist, nurse, otolaryngologist (ENT), pediatrician, psychologist, speech-language pathologist and other health care providers as needed.

A team-oriented approach ensures that care is provided in a coordinated and consistent manner, with the proper sequencing of evaluations and treatments within the framework of the patient’s overall developmental, medical, and psychological needs.

For more information about cleft and craniofacial conditions and to find resources and care in your community:

CONTACTS & INFORMATION:

American Cleft Palate-Craniofacial Association - acpa-cpf.org
Association of interested individuals and healthcare professionals representing more than 30 disciplines who treat and/or perform research on oral cleft and craniofacial conditions.
Contact: Alyssa Kirkman; (919) 933-9044; alyssa.kirkman@acpa-cpf.com

Children’s Craniofacial Association - ccakids.org
Children's Craniofacial Association, a 501(c)(3) nonprofit based in Dallas, Texas, serves over 20,000 families per year.  CCA's mission is empowering and giving hope to individuals and families affected by facial differences. CCA envisions a world where all people are accepted for who they are, not how they look.
Contact: Erica Mossholder; 214-570-9099; emossholder@ccakids.com

myFace - myface.org
myFace is a non-profit organization dedicated to transforming the lives of patients with craniofacial differences. With a special focus on children and their families, myFace funds medical, surgical, dental, speech and psychosocial services at the myFace Center for Craniofacial Care at NYU Langone Health, as well as research and public awareness.
Contact:  Dina Zuckerberg; 917-720-4701; info@myface.org

Smile Train - smiletrain.org
Empowers local medical professionals with training, funding, and resources to provide free cleft surgery and comprehensive cleft care to children globally. They advance a sustainable solution and scalable global health model for cleft treatment, drastically improving children’s lives, including their ability to eat, breathe, speak, and ultimately thrive.
Contact: Shari Mason, VP Communications; 212.689,9316; smason@smiletrain.org

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