Latest Blogs

Below is a list of blogs written by ACPA members and the National Office Team.

If you are interested in writing a blog, please email Alyssa Kirkman for more information.

*Disclaimer-The American Cleft Palate-Craniofacial Association and the Cleft Palate Foundation claim no responsibility for the content published by others on their web sites. Published content does not imply endorsement of either the organizations or the content of the meetings.

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In celebrating Cleft and Craniofacial Awareness Month, The Face the Future Foundation (FFF) sponsored its' 2nd annual summer picnic for the UI Health Craniofacial Center's patients and their families located in Chicago.  This year there were over 160 patients and family members who attended the picnic.  They enjoyed activities, games, and multiple inflatables such as a: slide, bouncing castle, bungee run, and  basketball.  There was a food truck stocked  with a variety of foods and Italian ice. Let's not forget the DJ who kept the energy up high throughout the afternoon!   We were very fortunate to have one of our patients  read from her craniofacial books, ...
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The Cleft Lip and Palate Clinic at Children's Hospital Colorado in Colorado Springs recently participated in a picnic for patients and families to celebrate National Cleft and Craniofacial Awareness Month. Over 200 people attended the event, an afternoon of fun and fishing at a local camp. They were also joined by mascot Cliff, a dog who also has a cleft. ACPA Member Dr. Mark Bentele was featured in a story about the event on KRDO in Colorado Springs: "It's important to bring them all together in this kind of situation so that socially they have a chance to see other kids who look like themselves."  View the stor
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ACPA is excited to announce updates to registration at ACPA’s 75 th Annual Meeting.  The meeting in Pittsburgh, April 10-14 2018, will Honor the Past, Challenge the Present, and Inspire the Future. This year all registration packages will include short courses and social events.  Advanced courses will be the only Annual Meeting Sessions with an additional charge. Registration to the meeting will be inclusive of all eye openers, study sessions, and social events.  The Pre-Conference Symposium, April 10, 2018, is a separate registration.    View the registration rates. This year’s meeting includes a 75 th Annual Gala.  Please watch for additional ...
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Lily: Giving Back with Birthdays

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Meet our friend, Lily. Lily was born with a cleft lip, and for the past three years, she has asked for donations instead of birthday gifts. This year, Lily donated over $215.00.  Here's Lily's story written by her mom: "Lily wasn't born when we found out she had a cleft lip. We found out at late-stage ultrasound, which led to a level II ultrasound that also detected a heart condition called, Tetralogy of Fallot. At the time of discovery in 2005, the Doctor did not supply much information about clefts and what we could expect, which greatly concerned us. To find more information, we went online and discovered the Cleft Palate Foundation (now ACPA Family Services) ...
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CHOP's Awareness Event

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On July 12, The Children’s Hospital of Philadelphia Cleft-Craniofacial Program held our 2 nd full day event in the hospital atrium centered on raising awareness related to facial differences.  We were pleased by the response not only by our patients and families, but also by the number of hospital employees who stopped by to ask questions about the many facial differences, both congenital and acquired. Our focus centered on education and included handouts on many different congenital craniofacial and cleft conditions, as well as tips for dealing with bullying (with suggested reading lists for children of all ages), dental hygiene, and overall safety ...
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ACPA Members Dr. G. E. Ghali, Dr. Jason Miller and Dr. Luiz Pimenta have recently been highlighted in the news. Ghali was mentioned in an article in the Leesville Daily Leader . The article is about Marissa Brown, a recent high school graduate, who has had 19 surgeries.  Dr. G. E. Ghali, oral and maxillofacial surgeon, Chancellor of LSU Health Sciences Center Shreveport and Dean of the School of Medicine, closed her cleft palate when she was 18-months-old. He has been her doctor since that first surgery. “Now they are trying to bring that lower jaw out,” said Margie. “There was a time when she couldn’t bite through a sandwich because her teeth ...
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ACPA Member Justine C. Lee, MD, PhD, FACS is posting a video series to spread awareness - #31days. The videos include patients and families talking about their experiences. "Basically, I just ask my patients who seem like happy people or who have an interesting story to tell about the project and they are usually happy to be involved," says Lee. "I tell them that they can say anything they want but generally something that could help somebody else - like words of encouragement, how to deal with bullies, how far they have come with their treatment, and things they like to do, etc." This is a project Dr. Lee started last year. She received a lot of positive ...
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We are happy to highlight ACPA Members Heather Hendricks, MD and William C. Brown, MD and their work in this week's member blog. Dr. Hendricks was recently highlighted in a segment on Fox 4 News in Kansas City, MO.  The segment follows the Dreilings and their choice to use nasoalveolar molding (NAM) with their daughter, Quinn.  From the segment: Dr. Hendricks is a cleft and craniofacial orthodontist who specializes in NAM. "The most important thing of NAM is the result of the nose; I`m able to mold and lift the nasal tip, the nasal cartilage in a way that it`ll be a long term result. We`re able to fabricate a nasal stint that goes inside of the ...
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Why is a first year graduate student interested in the treatment of patients with craniofacial conditions? That topic should be left to the post-doctorates. Numerous post-docs and clinicians have approached me with this mentality. Their comments are by no means impolite nor demeaning. Rather, they seem genuinely curious. The interest is driven by snapshots; glimpses of the lives these patients and their families lead. Observing Craniofacial Teams in the U.S. and abroad has provided opportunities to interact with patients and their families. When my class dives into the details of craniofacial alterations, I memorize the genetic mutations, the altered ...
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My name is Robyn Hughes. I am a museum professional at a Jewish history museum and a braille consultant in the Baltimore area. I have a BA in Jewish Studies with minors in Philosophy and Hebrew from the University of Maryland, College Park, an MA in German Jewish History with a focus on the German Jewish Coffeehouse Intellectuals from Baltimore Hebrew University and a Certificate in the Unified English Braille Code from the Canadian National Institute for the Blind. I was a visiting graduate student at Harvard University and at Hebrew University in Israel, and conducted research in London, Berlin, Vienna and Paris. My past as well as current community service ...
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ACPA Approved Teams and ACPA Members are helping to spread Cleft and Craniofacial Awareness this July.  The Craniofacial Team at Connecticut Children's Medical Center created a project for their patients - “Beyond The Face: A Tribute to Craniofacial Team Patients at Connecticut Children’s Medical Center".  Nineteen Craniofacial Team patients and two moms were professionally photographed by Patrick Kiniry. Filmmaker, Stephanie Sammann, captured the photo shoot, the unveiling of the portraits at the Bushnell Center for the Performing Arts, and interviews with patients, their families and Connecticut Children’s Medical Center staff in a dramatic and moving ...
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As of June 30, 2017, the Cleft Palate Foundation has merged with ACPA and has become ACPA Family Services.  ACPA is proud to represent professionals and families working together to build cleft and craniofacial awareness and improve care.  ACPA Family Services will provide support and resources to patients and families and will spread awareness of cleft and craniofacial conditions.  We would like to thank Marilyn Cohen for serving as CPF president, 2013-2017.  Please take a moment to read a letter Marilyn wrote to the ACPA Board, ACPA Members and CPF Board. Dear ACPA Board, ACPA Members and CPF Board: June 30, 2017 marked the sunset of the Cleft ...
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Help us spread awareness this month on social media with a Frame or a Twibbon. To add a Facebook Frame, visit the frame feature and search for "Cleft Awareness". To add a Twibbon to your Twitter profile, click here: https://twibbon.com/support/cleft-awareness-2/twitter# Keep an eye on our Facebook and Twitter page throughout July as we continue to spread awareness.
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ACPA/CPF Merger Announcement

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Good morning.   Today marks an important milestone for ACPA, as we will publicly announce the merger with the Cleft Palate Foundation. At 8 AM EST, the press release was distributed to news and healthcare trade media across the country. Our website has additional supporting information, including FAQs .   The merger is the culmination of months of intensive work by the boards and staff of both organizations. Throughout the process, we were inspired by a shared vision to achieve the best possible outcomes for individuals with oral cleft and craniofacial conditions and their families through education, support, research, advocacy, and interdisciplinary ...
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We are excited to announce that July is Cleft and Craniofacial Awareness Month in Chapel Hill, NC.  Mayor Pam Hemminger and the Chapel HIll Town Council made the proclamation at the Town Council meeting last night. ACPA's President-Elect Amelia Drake, MD, director of the UNC Craniofacial Center, accepted the proclamation from Council Member George Cianciolo. Dr. Drake also had a couple of minutes to speak about cleft awareness. "Many people are familiar with heart-rending pictures and stories of children born abroad with cleft lip and palate. What is less well known is that cleft lip and palate is one of the most common birth defects here in the United ...
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ACPA Members Joseph Williams, Sharline Aboutanos and Jesse Taylor were recently featured in the news. Dr. Joseph K. Williams was featured in an ABC News story, "Dad and daughter duo with cleft palates get surgery at same hospital decades apart".   From the article: Hattie Pierce was born with a cleft lip and palate. And when her mom and dad, Brian and Molly Pierce of Atlanta, saw her photo, they knew she would be their daughter. Brian and Molly Pierce had already decided to adopt from China prior to being matched with Hattie. Brian Pierce, too, had been born with a cleft lip and palate and as such, felt a special connection to the little girl whom ...
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The American Cleft Palate-Craniofacial Association (ACPA) is now accepting abstracts for ACPA's 75th Annual Meeting, April 10-14, 2018 in Pittsburgh, PA. All ACPA members and interested nonmembers are invited to submit abstracts on new research, developing information or instructional courses on cleft lip/palate and craniofacial anomalies. All submissions are due September 12, 2017. Submit an abstract . ACPA's 75th Annual Meeting will explore advances in research, clinical and team-driven care of patients as we honor the past, challenge the present, and inspire the future. Abstracts in the following categories will be considered: Oral Presentations ...
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A team of investigators from UNC-Chapel Hill, Duke University and the NC State Health Department collaborated with the NC State Department of Public Instruction to answer the question that many parents ask: How do children with cleft lip and cleft palate perform academically as compared to peers? Using merged state vital record data and end-of-grade testing data, we were able to look at the association between non-syndromic orofacial clefts and NC end-of-grade test performance in reading and math from third through eighth grade. We identified a non-syndromic group of 559 children with clefts and 6,822 children without birth defects. Using a logistic regression ...
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ACPA is participating in several events for Cleft and Craniofacial Awareness Month in July.   We are excited to build local and national awareness, and we hope all of our local members, doctors, families and friends can join us as we celebrate. Mayor Pam Hemminger and the Town of Chapel Hill are declaring July to be Cleft and Craniofacial Awareness Month in Chapel Hill.  ACPA's President-Elect Amelia Drake, MD, director of the UNC Craniofacial Center, will accept the proclamation on behalf of ACPA.  She will also speak a few minutes about cleft awareness. The public is welcome to attend the council meeting to see the award presentation on June 26 at 7:00 ...
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Member News: Steinberg

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ACPA Member Jordan Steinberg, MD, PhD was recently quoted in an article by Advocate Health Care.  The article, "He was meant to be my child" , tells the story of a child with cleft lip and palate who was adopted from China. From the article: “It is common in China that a cleft lip is repaired for adopted children but not the palate,” says Dr. Jordan Steinberg, pediatric and craniofacial plastic surgeon at Advocate Children’s Hospital. “In Trey’s case, palate repair was attempted but not successful. If the palate is not properly repaired very early in childhood, muscles do not function appropriately, and the patient can learn bad patterns for speech. ...
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