The Hidden Cleft Awareness Campaign
Most people have never heard of a laryngeal cleft. As a result, many children born with this birth defect struggle for months and years before being diagnosed.
It’s important for medical providers and parents to know that laryngeal clefts exist and be familiar with the symptoms. That way, children can be diagnosed quickly and treatment options can be considered.
How Can You Help?
Spread awareness!
Buy and wear our merch!
Share LCN’s Facebook community group, website, and social media content/profiles:
Spread Awareness!
Social Media
Laryngeal Cleft Awareness Day
Request a Laryngeal Cleft Awareness Day Proclamation in Your State
Most states allow residents to request a proclamation. Search your state’s website for a proclamation request form, or call your governor’s office to inquire. Some states also offer a proclamation signing ceremony. Though not required, it may help to have a personal connection that works in state government to help advocate on your behalf.
Please use the proclamation text below to include in your request.
3 Easy Steps!
Find your state’s website and search for “proclamation request.”
Fill out the form. Where appropriate, list your name and address as the requestor and LCN’s name and address as the recipient.
Include the proclamation text below. IMPORTANT: This language must be used. It has been approved for medical accuracy by LCN’s Medical Advisory Board.
Tips
Make sure to include your name and address as states want the requestor to be a resident.
The date doesn’t matter and will vary from state to state.
Consider honoring a Hidden Cleft Hero by selecting their birthday as the state’s awareness day.
Proclamation steps will vary by state. Please email us if you need help.
Understand that not all states will issue a proclamation for every request. All you can do is TRY!
If you succeed, be SURE to announce the great news in LCN’s Facebook Community, on your social media account (please tag us), and email us so that we can include it in our newsletter.
Need help? Email us at info@laryngealcleft.org
State Proclamation Text
The following text has been approved for medical accuracy by the LCN Medical Advisory Board.
Please copy and paste this text when submitting a proclamation request to your state.
In the last paragraph, replace the CAPITALIZED words with your governor’s name, state, and proposed awareness day date.
If you are not honoring a Hidden Cleft Hero in the proclamation, simply remove the second paragraph.
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WHEREAS, a laryngeal cleft is an abnormal opening in the airway that causes coughing, choking, swallowing, and breathing problems. This congenital birth defect is hidden in the voice box and is very difficult to diagnose. It is not a cleft lip, palate, or submucous cleft; and
WHEREAS, individuals in the state of STATE NAME like HERO NAME were born with a laryngeal cleft and have courageously fought to overcome this condition; and
WHEREAS, there are four types of laryngeal clefts, with type one being the most mild and type four being the most severe and often deadly; and
WHEREAS, laryngeal clefts were once thought to affect one in every 10,000 to 20,000 births, but experts now know mild clefts are much more common than originally thought. Studies now show up to 7.5 percent of children with chronic respiratory symptoms who need a rigid airway scope have a laryngeal cleft; and
WHEREAS, this hidden birth defect is mostly unknown by medical professionals and the general public, resulting in diagnosis delays of months or years, which causes health problems for the child and stress for their families. An undiagnosed or untreated laryngeal cleft often results in feeding difficulties, poor growth, chronic infections, dehydration, lung damage, developmental delays, and more; and
WHEREAS, children with feeding problems or signs of aspiration should be referred to an ear, nose, and throat doctor experienced with laryngeal clefts for further evaluation; and
WHEREAS, Laryngeal Cleft Network (LCN) is a nonprofit that promotes awareness, early diagnosis, and effective treatment of laryngeal clefts; and
WHEREAS LCN conducts awareness campaigns to help spread the news about this airway cleft, which needs to be diagnosed early and treated appropriately in order to prevent suffering and death in affected children.
NOW, THEREFORE, I, NAME, Governor of the State of STATE NAME, do hereby proclaim DATE, to be Laryngeal Cleft Awareness Day in STATE NAME, and I encourage all STATE NAME citizens to recognize this special observance through acts of service and community celebrations.
Custom Profile Photo
Get your own personalized profile photo to help spread awareness.
Please allow 5 days for your personalized profile picture to be emailed to you.
1. Choose your option:
Hidden Cleft Hero: displays the picture of a person who has a laryngeal cleft.
The Hidden Cleft: displays any photo you’d like to use.
Both versions will work for Facebook, Instagram, and LinkedIn profile photos.
Questions? Email: info@laryngealcleft.org
2. Request your personalized profile photo:
Profile Photo Announcement
By simply changing your profile photo and explaining why, you can help build awareness. Please copy and paste the text below to announce your profile photo change. Feel free to adjust to suit your needs.
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I’m changing my profile picture to help raise awareness for LARYNGEAL CLEFTS. This type of cleft is a gap in the tissue that normally separates the airway from the digestive tract.
Symptoms include coughing/choking when swallowing, a wet-sounding voice, lung infections, poor growth, and more.
This little-known birth defect is hidden deep in the throat, which makes it very difficult to diagnose and treat. Children often suffer for months and years before being diagnosed.
MORE INFORMATION: www.laryngealcleft.org
GET YOUR OWN PERSONALIZED PROFILE PHOTO: www.laryngealcleft.org/awareness
Facebook Cover Photo
Click on the image below to download, then save and use as the cover photo on your Facebook page.
On mobile, you may need to open the image in a new tab or external browser in order to save to your phone.
Social Media Tools