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July is National Cleft & Craniofacial Awareness and Prevention Month

This annual event aims to promote understanding and encourage early diagnosis and treatment of cleft and craniofacial conditions.

Did you know that one in 700 children worldwide are born with a cleft lip or cleft palate?  

 

These conditions, along with other craniofacial differences, affect millions of individuals around the world.  

 

Observed every July, National Cleft & Craniofacial Awareness and Prevention Month is all about increasing understanding and support for those affected by these conditions.  

 

This month is a chance for everyone to come together to raise awareness, foster inclusion, and promote early diagnosis and treatment efforts. 

What are cleft and craniofacial conditions?

Cleft and craniofacial conditions cover a variety of disorders that affect the head and face.  

 

The most common are cleft lip and cleft palate, which occur when the tissues of the lip or the roof of the mouth don’t fully form during early fetal development.  

 

Other craniofacial conditions include craniosynostosis (premature fusion of skull bones), hemifacial microsomia (underdevelopment of one side of the face), and Treacher Collins syndrome (affecting the development of bones and tissues in the face). Craniofacial conditions can also be the result of trauma, such as burns or dog bites.  

 

These conditions can impact eating, speaking, hearing, and overall appearance, often requiring surgical interventions and ongoing care. Beyond the physical challenges, individuals with craniofacial conditions often face stigma, bullying, social isolation, and self-esteem issues. 

History of National Cleft & Craniofacial Awareness and Prevention Month

While many cases of cleft lip and other craniofacial conditions can’t be prevented, certain measures — such as taking folic acid during pregnancy — may help lower the risk. Access to prenatal care is crucial for the prevention and early diagnosis of these conditions. Early diagnosis can help families prepare emotionally, as well as get connected with proper medical resources such as surgeons and feeding therapists who specialize in treating babies with craniofacial differences.  

 

National Cleft & Craniofacial Awareness and Prevention Month was set up to spotlight the challenges faced by individuals with craniofacial conditions and to emphasize the importance of early diagnosis and treatment. This month-long observance serves as a platform to showcase medical advancements, share personal stories, and advocate for policies that support research and access to treatment. 

5 Ways to Participate in Cleft & Craniofacial Awareness and Prevention Month

Here are five ways to raise awareness and support individuals with cleft and craniofacial conditions:

1. Share quotes from people with cleft and craniofacial conditions

There’s a big difference between reading about cleft and craniofacial conditions, and hearing directly from those affected.  

 

Quotes from individuals with cleft and craniofacial differences humanize the condition in a way that data and statistics simply can’t. Whether they’re from a famous person or an advocate, quotes have the power to promote empathy and bring visibility to the issues faced by those with craniofacial differences. This representation is crucial for advocacy efforts and for pushing for better medical care, social acceptance, and inclusion. 

 

Here are a few inspiring quotes to share on your social media and other platforms this month:  

 

  • Jono Lancaster: Born with Treacher Collins syndrome, Jono Lancaster has become a motivational speaker and advocate. He once said, “A simple human connection can change somebody’s life forever, sometimes in a negative way and sometimes in a positive way.” 

 

  • Joaquin Phoenix: The actor, who was born with a microform cleft lip, has spoken about the importance of empathy and compassion. He said, “Human beings, at our best, are so inventive and creative and ingenious… when we use love and compassion as our guiding principles, we can create, develop, and implement systems of change that are beneficial to all.” 

 

  • RJ Mitte: Known for his role in “Breaking Bad,” RJ Mitte, who has cerebral palsy, has been an advocate for people with disabilities, including those with craniofacial differences. He remarked, “One thing I’ve learned from my disability is that when there is an obstacle, you adapt and grow. You can’t let that obstacle break you down and discourage you.” 

2. Host an “Art and Awareness” event

Art has long been a powerful medium for raising awareness and driving social change. When it comes to cleft and craniofacial conditions, art can be particularly impactful.  

 

Art has the ability to convey stories and emotions in a way that connects to people. For individuals with craniofacial conditions, creating art can be a form of self-expression and empowerment. 

 

This month, organize an art contest focused on cleft and craniofacial themes. Participants can create drawings, paintings, or digital art that depict their experiences or raise awareness about these conditions. Display the artworks in a virtual gallery or local community centers.  

 

This campaign can include an educational component where artists share the stories behind their creations, helping to humanize and destigmatize craniofacial differences. 

3. Donate to NICUs and hospitals

Consider donating to, or organizing a donation drive for, NICUs or hospitals that treat babies with cleft and craniofacial differences. Items such as specialized feeding bottles, comfort toys, blankets, and care packages can be immensely helpful for parents. Additionally, monetary contributions can support medical care, family support services, and research initiatives. 

4. Cook for a cause

Host a virtual cooking class or bake sale featuring recipes from families affected by cleft and craniofacial conditions. Share the stories behind the recipes and how food has played a role in their journeys.  

 

Proceeds from the bake sale can be donated to organizations supporting craniofacial research and care. This activity not only raises funds but also builds community by sharing diverse culinary traditions and personal stories. 

5. Advocate for prenatal care and treatment 

Another impactful way to support individuals and families affected by cleft and craniofacial conditions is by writing to your state and federal representatives 

 

In your letter, urge legislators to support policies that ensure equitable access to prenatal care and other essential medical services. Emphasize the importance of comprehensive insurance coverage for the treatment costs associated with cleft and craniofacial conditions, which often require multiple surgeries, specialized medical care, and ongoing therapy.  

 

By voicing your concerns and recommendations, you can help drive legislative action and promote better healthcare outcomes for those living with cleft and craniofacial differences. 

Download the free Disability Events calendar

National Cleft & Craniofacial Awareness and Prevention Month offers a unique opportunity to shine a light on the experiences of those with craniofacial conditions and to promote understanding and support. Whether you share a quote on your social media or participate in a fundraising event, your support can help foster a more inclusive and compassionate world for everyone. 

 

For more ideas to promote inclusion all year round, download the free Disability Events Calendar.  

Free Resource: 2024 Disability Events Calendar
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