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.

A Lasting Impact

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ACPA donors choose to give for many reasons.  This spring, PhD candidate Paul Pown Raj Iyyanar was awarded the Subtelny Orthodontic Clinical Research Grant.  Sadly, just one month later, his research mentor Dr. Adil J.Nazarali passed away unexpectedly.  “Dr. Adil J. Nazarali was a Professor of Pharmacy at University of Saskatchewan, Canada, where he was actively involved in research and teaching. Dr. Nazarali was a world-class researcher, in both the fields of cleft palate and multiple sclerosis. Dr. Nazarali was recently inducted as a Fellow of the Royal Pharmaceutical Society of Great Britain, and was one of the three Royal Pharmaceutical Society Fellows ...
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Last week, the ACPA National Office team took a field trip down the road to visit the UNC Craniofacial Center. Our staff joined the UNC Craniofacial team for lunch and sat in on one of their weekly team meetings. While ACPA staff works daily with ACPA approved teams and members, this visit was the first opportunity for some of us (myself included) to actually observe a team meeting in action. It was fascinating to witness professionals across many disciplines come together to focus on their patients. These patients have a variety of needs, from surgeries to speech therapy to psychosocial care. The team discussed each person individually, working to address ...
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The Walter Reed National Military Medical Center Craniofacial Team hosted their first patient reunion in July.  The event, held at the USO Warrior and Family Center in Bethesda, MD, was timed to celebrate National Cleft and Craniofacial Awareness Month.  Around 70 patients, family members, and volunteers came to the event. Air Force Lt. Col. (Dr.) Kerry Latham is the craniofacial team leader. “Walter Reed National Military Medical Center has supported a craniofacial team for more than 30 years,” Latham continued. “The multidisciplinary craniofacial team focuses on providing excellent care to children and adults with facial differences such as cleft ...
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ACPA Member Donna McDonald-McGinn, MS, LGLC, is Director of 22Q and You Center, Children's Hospital of Philadelphia.  Mcdonald-McGinn was recently featured in a story about Diagnosing 22Q on WJMN-TV.  The segment is about Jasmine, a 12-year-old diagnosed with 22Q deletion. Jasmine, now 12, was born prematurely and had feeding problems as an infant. As she got older; developmental delays and scoliosis, as well as ADHD. Veda Brown, Jasmine's mother says, "Around eight months she was tested at CHOP: The Philadelphia Children's Hospital and then they detected the 22Q deletion." Jasmine received speech, occupational and physical therapy. But when 22Q ...
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As part of the budget planning process for Fiscal Year 2019, NIDCR is identifying topical themes for development into research initiatives. During this process, they welcome input from research and clinical practice communities, industry, interested organizations, and the public at large. Briefly, the proposed research themes for FY 2019 are: Advancing Our Understanding of Enamel Development Basic and Translational Research on HIV and AIDS-Related Pathogens in the Oral Cavity Bioinformatics/Data Science Jumpstart for Dental, Oral, and Craniofacial Diseases Biological Factors Underlying Dental, Oral, and Craniofacial Health Disparities Biology ...
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Thank you to our Members

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This has been an incredible year for ACPA as we continue to serve our vision: to create a world, through team care, where individuals with oral cleft and craniofacial conditions thrive. We completed the merger of ACPA and the Cleft Palate Foundation (CPF), and we are now a unified organization serving the entire cleft and craniofacial community - individuals affected by cleft lip and palate, families, students and professionals.  We will continue to provide the same professional home you have come to expect as we change and evolve.    ACPA members strengthen our combined ability to optimize outcomes for individuals with oral cleft and craniofacial conditions ...
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On July 21st, the Craniofacial Team at Golisano Children’s Hospital in Rochester, NY held their annual camp day for patients and families at Yogi Bear’s Jellystone Park. More than 185 kids, family members, and our team members spent the day together -- playing kickball, competing in an egg-in-spoon relay race, going on hayrides, and having lunch with Yogi Bear. The event is held every year in July to celebrate Cleft and Craniofacial Awareness Month.  View more photos of the event on Golisano’s Facebook page . ACPA Members from the Ark-La-Tex Cleft and Craniofacial Team appeared on Red River Radio to discuss cleft lip and palate. Dr. Jennifer Woerner, ...
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Get Involved with ACPA

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The ACPA National Office Team is ready to help you get involved with ACPA so that you can get the most out of your annual membership.  We are excited that more members are engaged with ACPA in 2017, and we hope you become more involved as we continue to grow the ACPA Community. ACPA President Robert Havlik wrote about this topic in his President’s Letter this week: This year, we established a benchmark for engagement and began to monitor our progress as we increased member value. Here’s what we found: FY2017 59.2% of members engaged with ACPA FY2016 43.4% of members engaged with ACPA The growth was partially due to increased communications ...
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We’ve enjoyed spreading awareness and celebrating our cleft community again this July. We have received story submissions from families and professionals that we’ve posted on this blog and on our social media pages – and we can’t wait to keep sharing your stories throughout the year. Please make sure to read past posts so that you can see everything our community has been up to. We also had the opportunity to participate in several local events as we spread awareness locally in Chapel Hill.  On July 8, we lead a story time at Kidzu Children's Museum . Thanks to Dr. Amelia Drake and her friend Julia for spreading awareness of facial difference s by ...
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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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