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American Cleft Palate-Craniofacial Association - ACPA
The American Cleft Palate-Craniofacial Association (ACPA) is an international non-profit medical society of health care professionals who treat and/or perform research on birth defects of the head and face.
The Cleft Palate Foundation (CPF) was founded by American Cleft Palate-Craniofacial Association (ACPA) in 1973 to be the public service arm of the professional association. Link to CPF parents-individuals publications
and fact sheets.
Team Care Teams are comprised of experienced and qualified professionals from medical, surgical, dental, and allied health disciplines working in an interdisciplinary and coordinated system. The purpose and goal of Teams is to ensure 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. Craniofacial team, Wikipedia
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Standards for Cleft Palate and Craniofac[...]
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American Cleft Palate-Craniofacial Association
The following are three sets of speech samples for men, women, and children spanning the range in equal intervals from normal to extreme hypernasality (Reference 1 to Reference 8 in each set).
You will need to have an audio player installed on your computer which can play .ram files. One such player is VLC Media Player. Click here for a free copy.
Further details can be found in the following article which was supported by Grant # R01 DE10436 NIH-NIDR:
Kuehn DP, Imrey PB, Tomes L, Jones DL, O'Gara MM, Seaver EJ, Smith BE, Van Demark DR, Wachtel JM. Efficacy of continuous positive airway pressure for treatment of hypernasality.
Future Directions - Dr. Berkowitz on the CPF YouTube Channel
Dr. Samual Berkowitz, The Cleft Lip/Palate Resource
Cleft Palate Treatment: The Road to Normalcy, by Dr. Berkowitz
Historical Review of my CL&P and left lateral incisor, $11,775
Photo Journal: Habilitation of Congenital Craniofacial Disorder
Letter, Aleisa McKinlay, Director Florida DVR, February 11, 2014
Letter August 25, 2014 re Florida Unborn Victims of Violence Act
Representation of Petitioner Florida DVR SC11-1622 Appendix-14
College paper (1998): Vocational Rehabilitation
College paper (1995): Psychosocial Implications of Congenital CFA
College paper (1995): Freud's theory of Infantile Sexuality for CFA
Letter March 31, 2015 to the AmeriFace Board of Directors
Letter April 14, 2015 to the AmeriFace Board of Directors
The Cleft Palate-Craniofacial Journal - CPCJ
Editor: Dr. Jack C. Yu, DMD, MD, MS ED
Georgia Regents University, Chief of Plastic and Reconstructive Surgery
The Cleft Palate Journal Archives, published from 1964 through 1989, hosted by the Pitt Library System can now be accessed at: http://digital.library.pitt.edu/c/cleftpalate/
Cleft Palate-Craniofacial Journal News. Celebrating the 50th Anniversary of the Cleft Palate-Craniofacial Journal July 2013
By Jack C. Yu, MD, DMD, MS Ed
Editor, Cleft Palate-Craniofacial Journal
In January 1964, ACPA published Volume 1, Issue 1 of the Cleft Palate Journal. Half a century, thousands of articles and hundreds of issues later (228 to be exact), we celebrate the Journal’s golden anniversary. Looking back at the first 45 articles in that inaugural volume of the Journal, written by mentors of our mentors, like Converse, Cronin, Mazaheri, McWilliams, Millard, Pruzansky, Warren, and Watson, to name a few, you can’t help but get a sense of pride and awe. I would like to give a brief update about the Journal, the upcoming features and changes, and highlight how we are marking this historical point in time. Read more
Cláudia Berbert-Campos, (2007) Legal Considerations in the Management of Cleft Lip and Palate. The Cleft Palate-Craniofacial Journal: March 2007, Vol. 44, No. 2, pp. 223-225. (PDF)
Objectives: To inform professionals providing care to individuals with cleft lip and palate on the legal aspects and organizations available to protect individuals with this alteration, and to advocate that cleft lip and palate should be considered a handicap, even though it is provisional and may be rehabilitated, to assure afflicted individuals basic rights and complete personal, social, and economic welfare.
Masoud Saman, Justin Gross, Alexander Ovchinsky, and Donald Wood-Smith (2012) Cleft Lip and Palate in the Arts: A Critical Reflection. The Cleft Palate-Craniofacial Journal: March 2012, Vol. 49, No. 2, pp. 129-136. (PDF)
Conclusion: Social media have an important role in defining the norms of society. Much of the art of the past has depicted negatively individuals born with cleft lip and/or palate deformity, thus excluding them from the norm. In order to decrease the negative social stigmas of cleft lip and/or palate, it is now the responsibility of society to widen its range of norms to include individuals born with these deformities through “normal” representations in the various media.
Trevor Anderson, (1994) Medieval Example of Cleft Lip and Palate from St. Gregory's Priory, Canterbury. The Cleft Palate-Craniofacial Journal: November 1994, Vol. 31, No. 6, pp. 466-472. (PDF)
An archaeologically retrieved skeleton from medieval Canterbury possibly of the late eleventh or twelfth century, displays clear evidence of cleft lip and palate. A case of cleft palate dating from the seventh century, is known from an Anglo-Saxon cemetery at Burwell. This is the first evidence for both cleft lip and palate in British archaeological material. The individual had survived into adulthood. Apart from an odontome, there was no osseous evidence of any other abnormalities. Artistic evidence of cleft lip dates to the fourth century B.C. and surgical intervention (A.D. 390) is known from China.
Josée Despars, Camille Peter, Ayala Borghini, Blaise Pierrehumbert, Stéphanie Habersaat, Carole Müller-Nix, François Ansermet, Judith Hohlfeld, (2011) Impact of a Cleft Lip and/or Palate on Maternal Stress and Attachment Representations. The Cleft Palate-Craniofacial Journal: July 2011, Vol. 48, No. 4, pp. 419-424. (PDF)
Results: The study shows that mothers of infants with a cleft more often experience insecure parental working internal models of the child and more posttraumatic stress symptoms than mothers of the control group. It is interesting that the severity or complexity of the cleft is not related to parental representations and posttraumatic stress disorder symptoms. The maternal emotional involvement, as expressed in maternal attachment representations, is higher in mothers of children with a cleft who had especially high posttraumatic stress disorder symptoms, as compared with mothers of children with a cleft having fewer posttraumatic stress disorder symptoms.
Jessica Knight, Cynthia H. Cassell, Robert E. Meyer, and Ronald P. Strauss (2015) Academic Outcomes of Children With Isolated Orofacial Clefts Compared With Children Without a Major Birth Defect. The Cleft Palate-Craniofacial Journal: May 2015, Vol. 52, No. 3, pp. 259-268. (PDF)
Main Outcome Measures: Letter grades, school days missed, and grade retention.
Results: Parents of children with isolated OFC reported more developmental disabilities and hearing and speech problems among their children than comparison parents. Children with isolated OFC were more likely to receive lower grades and miss more school days than unaffected children. Because of the low response rate, results should be interpreted cautiously.
Conclusion: Children with isolated OFC may have poorer academic outcomes during elementary school than their unaffected peers. Future studies are needed to confirm these results and determine whether these differences persist in later grades.
Claire Hamlet and Diana Harcourt (2015) Older Adults' Experiences of Living With Cleft Lip and Palate: A Qualitative Study Exploring Aging and Appearance. The Cleft Palate-Craniofacial Journal: March 2015, Vol. 52, No. 2, pp. e32-e40.
Objective: To explore older adults' experiences of living with cleft lip and/or palate (CL/P), focusing on aging and appearance.
Design: An exploratory-descriptive qualitative study.
Participants: Individual semi-structured interviews (five via telephone, one face-to-face) conducted with six adults between the ages of 57 and 82 years.
Results: Interview transcripts were analyzed using interpretative phenomenological analysis, which resulted in five themes: cleft across the life span, keeping up appearances, being one of a kind, resilience and protection, and cleft in an ever-changing society. A CL/P had an ongoing impact on participants' lives, although its relevance shifted over time and some aspects of life (e.g., romantic relationships, decisions about having children of their own) were particularly affected. Participants seemed at ease living with CL/P as an older adult and considered it an important aspect of their identity, yet they still described feeling isolated at times and had little contact with other people with a cleft. They felt that health care could be more considerate to the needs of older people with a cleft, particularly around dentistry and information provision. Participants thought societal attitudes toward visible differences had changed over the years, but not necessarily for the better. A paradox was evident between reports of being noticed by others because of their cleft and simultaneously feeling invisible or ignored because of their age.
Conclusions: These findings have implications for provision of care for older adults with a CL/P and for younger people with a CL/P who will be the older generation of the future.
Hamlet and Harcourt, OLDER ADULTS’ EXPER[...]
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Ronald P. Strauss, (2002) Beyond Easy Answers: Prenatal Diagnosis and Counseling During Pregnancy. The Cleft Palate-Craniofacial Journal: March 2002, Vol. 39, No. 2, pp. 164-168.
Conclusion: Prenatal diagnostic technologies raise complex ethical, family, policy, and legal issues that have broad implications for the lives of children born with special health care needs, including children with cleft lip and palate. (PDF)
For an example of the issues, see Opposing Views: Parents Defend Decision To Keep Baby Who Was Born With Same Rare Condition As Father, By Jonathan Constante, April 28, 2015
A father born with a rare facial disfigurement says he is going to tell his daughter — who was born with the same condition — that she is beautiful every day (video [above]).
Simon Moore, 30, was born with Treacher Collins syndrome and has suffered a great deal because of it. The condition affects 1 in 50,000 babies and is characterized by facial disfigurements, such as the absence of cheekbones.
Moore spent most of his childhood indoors to avoid bullies and being ridiculed, Metro UK reported. Even to this day, Moore describes dealing with strangers who point and stare at him in the street.
Despite his own struggles in living with TC, he and his wife Vicky decided to keep their baby girl Alice after scans during pregnancy revealed she had the condition. Read more
Thank you Ciara for posting My cleft lip and palate story.
Also see Presentation1, a moving music tribute by Ciara Provencio.
Stay strong Ciara, wishing you all the best.
Cleft Lip and Palate, Catherine J, Jan 24, 2015. This is my story with growing up with Cleft Lip and Palate
as a trans woman.
DaniellesStory 2 videos - 14 years old - update at age 16
DaniellesStory YouTube Channel
Published on Mar 10, 2013
Hi There :) So his was a pretty intense video i know. Hopefully anybody who watches these videos will understand, and know that I am NOT In any way shape or form seeking any kind of attention. If any of my friends or people from my school are watching this, I only made this so you know what I'm going through, before your so quick to judge. Love you all, and just message me if you ever want to talk. :) -Danielle
DaniellesStory YouTube Channel
Published on Aug 15, 2014
I AM SO SORRY FOR COMPLETELY ABANDONING THIS CHANNEL GUYS. So like I said in the video, I have had several surgeries since my previous video. I can still attempt to
find the correct clips and put them into a video for you all, AND I WILL. I promise! I love each and every one of you beautiful people to the moon and back, and you can do anything your heart
desires, so don't let your cleft lip and/or palate hold you back! Please leave questions or concerns in the comments and I will answer them :)
Thank you Lauren for telling your cleft story. Lauren's Channel