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 claims no responsibility for the content published by others on its web site. Published content does not imply endorsement of the organization or the content of the meetings.

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Danbury, Conn., Jan. 16, 2018— The National Organization for Rare Disorders (NORD)®, the leading nonprofit organization dedicated to helping the 30 million Americans with rare diseases, today announced its new 7,000 Mile Rare Movement, challenging Americans to pledge dollars to walk, run or bike 7,000 miles collectively throughout the month of February. The 7,000 miles represent the 7,000 known rare diseases, most of which are life-altering and do not yet have a treatment or cure. The movement will kick off Feb. 1 and run through the end of the month, culminating on Rare Disease Day on Feb. 28. Proceeds from the 7,000 Mile Rare Movement will support research ...
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This simple yet significant message was on the admission sign as I was paying to go into a auto museum. As I walked around looking at all the beautiful classic cars, I kept thinking about the sign. What if? What if every home, school, company, restaurant, airport, stadium, and park posted a sign saying the same thing? Mean people and bullies not welcome. This simple yet significant message would be seen everywhere. It’s a global message. You could live in a northwest suburb of Chicago and see the signs everywhere or you could be in Florence, Italy and see the same message. When I was growing up, there was a song on the radio. It was in the 70s.  Tony Orlando ...
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The deadline is quickly approaching—ACPA research grant proposals must be submitted by February 1, 2018 (online application link here ).  Funding opportunities include: Subtelny Speech Research Grant - one 1-year grant for $5,000 This grant promotes research related to effective speech and language pathology treatment modalities and strategies for patients with cleft lip and palate and other craniofacial anomalies. The grant is open to senior and junior investigators.  Priority will be given to clinical research, but basic research proposals will also be accepted.   Subtelny Orthodontic Research Grant - one 1-year grant for $5,000 This grant promotes ...
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As we celebrate ACPA’s 75 th Anniversary in 2018 , we will be sharing stories from ACPA members about their ACPA experiences.  We are proud of the work our members have accomplished in support of our mission: to optimize outcomes for individuals with oral cleft and craniofacial conditions through education, support, research, advocacy, and interdisciplinary team care. Please join us in celebrating our anniversary by learning more about our members and the patients and families they serve. Today’s story is from Suzanne M. Beshore RN, BSN, MS, CORLN.    “I first learned of ACPA while pursuing my master’s degree at the Betty Irene Moore School of Nursing. ...
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Join your colleagues at the meeting for cleft and craniofacial specialists. ACPA’s 75th Annual Meeting is April 10-14, 2018 in Pittsburgh, PA. Register now. Register by January  31, 2018 to receive the early-bird rate. Meeting registration includes all eye openers, study sessions and social events. Advanced courses are the only sessions with an additional charge. The Pre-Conference Symposium on April 10, 2018 is a separate registration.    Register now. View the complete schedule for more information, including session descriptions. Highlights include: Keynote Presentation Pre-Conference Symposium Short Courses Advanced ...
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Parents typically have the most awareness of their child’s communication patterns. Perhaps the child has difficulty pronouncing certain letters or leaves off the beginning or ending of some words. Although these communications patterns are speech-related, hearing may be the root cause of these behaviors in some cases. ACPA offers an informative booklet called “Help with Hearing” as a guide for parents looking to better recognize how their child’s hearing may be impacted when they have a cleft or craniofacial condition. Good hearing is vital to the overall well being of your child. Hearing loss is common in newborns, even in babies without cleft lip or ...
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Our friend Morgan Weintraub and ACPA Executive Director Wendy-Jo Toyama joined WBTV News on Morning Break in Charlotte, North Carolina yesterday. This was a great opportunity for ACPA to continue to talk about Wonder and how our work with patients and families helps to spread awareness. In the first segment, Morgan talked about life with Crouzon Syndrome. View the clip here: Local 'Wonder' girl talks about life with Crouzon Syndrome . For the second segment, Wendy joined Morgan to talk about ACPA's Wonder screening in Durham and to discuss the American Cleft Palate-Craniofacial Association (ACPA) 's important mission. View the clip here: ...
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The American Cleft Palate-Craniofacial Association (ACPA) is celebrating its 75th Anniversary in 2018.  ACPA was founded in 1943 following an interdisciplinary course on the construction of speech appliances for children at Pennsylvania State College.  The Association has gone through several name changes over the years – starting out as the American Academy of Cleft Palate Prosthesis – and the focus has always been the pursuit of excellence in research and in the delivery of team care to patients with cleft and craniofacial conditions. ACPA is proud to celebrate 75 years of team care. The original purpose of ACPA holds true in the mission: to optimize outcomes ...
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'Tis the season for giving

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This time of year, it’s easy to get wrapped up in the hustle and bustle of the holidays. The season tends to be consumed with parties, hosting or visiting family and friends, and giving gifts to loved ones, all of which can take a lot of time and effort. ‘Tis the season for giving and we ask that you consider one more quick gift this year – one that will benefit those we serve.   Many know the story of Charlotte Gould, a rising star in the cleft community, who is known for her big heart and determination to help fellow cleft families in Phoenix. Starting when she was just 4 years old, Charlotte began receiving donations instead of gifts for her birthday ...
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From all of us at the American Cleft Palate-Craniofacial Association, best wishes for a joyous holiday season and our sincere thanks for your support throughout the year. The ACPA National Office will be closed December 22, 25, 29 and January 1.  We look forward to continuing to work with you in 2018! #ACPA
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Hello, my name is Tamala Coleman, and I reside in Georgia. I am 48 years old. My journey has been a blessed one. I was born in Nuremberg, Germany while my father served in the military (Army). I was born with a cleft lip, which is a congenital defect, or birth defect, which occurs early in pregnancy. My story may be similar to many other babies born with either a cleft palate or cleft lip. It was very important for me to educate myself about this birth defect. I often wondered why God allowed me to have this birth defect, but as I grew older, I realized I am truly blessed. After I was born, my parents had to agree to send me to a special hospital miles away ...
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As we approach our 75 th anniversary year, ACPA is pleased to announce an exciting development for cleft and craniofacial education.  In 2018, we will begin offering webinars to professionals engaged in cleft and craniofacial care and/or research. Many of these webinars will provide continuing education credit and some will be free to ACPA members as an added benefit of membership. Topics will be tailored to meet the needs of our multidisciplinary membership.  To assist in the development of this new program, please complete this brief survey by January 5, 2018.  More information on ACPA’s educational initiatives and webinar opportunities will be provided ...
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Winston Churchill famously said that “we make a living by what we get, but we make a life by what we give.” Add to that Ferris Bueller’s immortal axiom that “life moves pretty fast. If you don’t stop to look around once in a while, you could miss it,” and you have a pretty good idea of what it feels like to participate in an Operation Smile mission. Traveling to India’s easternmost state to the port city of Haldia for a cleft lip and palate repair mission quickly transformed from intimidating to inspiring. Within moments of meeting each other, bonds were formed between local Indian and visiting international colleagues from six different continents. Through ...
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Together We Are Stronger

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By virtue of our merger this year, the Cleft Palate Foundation and the American Cleft Palate-Craniofacial Association (ACPA) have already proven that we are stronger together. Patients, families and ACPA are stronger together. ACPA member-physicians and care providers who make up interdisciplinary teams are stronger together.  ACPA and its donors are stronger together.   By working together, we all have a positive impact on the lives of individuals with cleft and craniofacial conditions and their families.   Now, we invite you to join us. Please consider a gift to our “Together We Are Stronger” Annual Campaign. Your contribution will help parents like this ...
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Like many other teams when we heard the book Wonder was being made into a movie we were very overjoyed and our team Family Advocate, Ann Lindahl, and her parent steering committee quickly brainstormed and started fundraising.  We have a yearly picnic for our families.  At our last picnic, in January 2017, we provided each family with a copy of the book ‘Wonder’.  Over the course of the year we heard from so many families how much they appreciated this gift and enjoyed reading the book on their own and with their children.  Due to the extraordinary efforts of our steering committee our team was able to purchase 200 movie tickets for our patients and their families ...
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The American Cleft Palate-Craniofacial Association (ACPA) is a nonprofit association of interested individuals and health care professionals who treat and/or perform research on oral cleft and craniofacial conditions. One such condition, Treacher Collins syndrome, was the subject of a recent   20/20   program on the ABC network – as well as the current motion picture,   Wonder . The information shared in the 20/20 program was largely accurate and beneficial to public understanding about the experiences of patients with Treacher Collins and their families. However, a statement that parents of children born with the syndrome have a 50% chance that subsequent ...
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With the holiday break approaching, it’s a great time to work on ACPA research grant proposals.  All submissions must be received by February 1, 2018.   ACPA grants may be key to launching new projects that are later supported by larger funding institutions.  ACPA thanks the generous donors who continue to make our grants available to investigators in cleft and craniofacial research. ACPA funding opportunities for 2018 include: Subtelny Speech Research Grant - one 1-year grant for $5,000 This grant promotes research related to effective speech and language pathology treatment modalities and strategies for patients with cleft lip and palate and other ...
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Starting or expanding a family can be a time when a greater amount of questions and discussion happen regarding family health, history, and future. ACPA offers an informative booklet called “Genetics and You” as a tool for parents interested in getting a better understanding about the role DNA, genes and the environment play when it comes to individuals with cleft. When a baby is born with a cleft or other craniofacial birth defect, one of the parent’ immediate concerns is for the child’s care. Once plans for treatment are underway, an early spoken or unspoken question is why this happened to the child and what the chances are that other children with clefts ...
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The Craniofacial and Cleft Lip and Palate Program at The Hospital for Sick Children is sharing their special connection to Wonder. Jacob Tremblay, the star of the movie, has been connected with the center since 2016. "While preparing to take on the role, Jacob reached out to the Cleft Lip and Palate and Craniofacial Programs at SickKids to understand more about what it’s like to have a craniofacial difference. Eight current and former patients wrote to him, detailing their experiences, from all the surgeries and medical procedures to the bullying and stares from both peers and strangers. Jacob read and re-read their letters before filming difficult scenes ...
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#ACPAChoosesKind

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Sitting in a dark theater with almost 300 members of our local community was an inspiring experience. We’ve known for a while that the movie Wonder was being released, and – like many of you – we’ve been so excited. This is a rare opportunity to spread awareness of craniofacial differences and related experiences in the triangle and nationwide. The ACPA screening was held in Durham, and the event sold out ahead of time. We had a wide variety of people attend – from a 5 th grade class that had read Wonder , to ACPA members on the ACPA Approved Teams in Durham, Chapel Hill and Winston Salem, to affected individuals and their families. The event started with ...
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