Remember to stand, take a deep breathe, and THEN introduce the charity and yourself. There is no rush, make sure you start your presentation calmly, and pace yourself. Speak nice and clearly. At this point you can tell the audience if you are happy for questions to be asked throughout, or if they should wait until the end. Introduce yourself now, and repeat at the end of the presentation. YOUR NAME Your Role

What is cleft lip & palate? Cleft means ‘split’ or ‘separation’. In early pregnancy, different parts of a baby’s face develop separately and join together in the middle of the mouth. If some parts do not join properly, the baby is born with a cleft. This gap can be in the upper lip (cleft lip), the roof of the mouth (cleft palate), or both. A cleft might make a baby look different, but it doesn’t hurt. With the right care and support, babies with a cleft will grow up to be just as happy, healthy and successful as anyone else. A cleft is a gap left when the parts of a baby’s face don’t join together all the way. A ‘cleft lip’ is a gap in the upper lip A ‘cleft palate’ is a gap in the roof of the mouth

Around one in every 700 babies around the world are born with a cleft. That’s 1,200 babies born with a cleft every year in the UK! There are around 90,000 people who were born with a cleft living in the UK. All together, they could fill up Wembley Stadium.

Why does it happen? There’s no simple answer! Usually, lots of small things all happening together in a particular way which tips the balance. These things include what genes your parents pass on to you and how they affect you while you develop. There is a lot of research happening now to understand more. There is no simple answer. Most of the time, a cleft is caused by lots of small things all coming together in a particular way. For example: certain genes from our parents being passed on, or certain things in the environment. By themselves, these things usually wouldn’t mean much. But when enough of them happen together in the right environment, the baby will be born with a cleft. If a few people in your family have a cleft, it’s more likely that you’ll have a cleft too, because there are more of these things being passed on. There is a lot of research happening right now to understand more about some of the things that contribute to a cleft, but it’s unlikely there will ever be a simple answer. Because there are so many different little things that contribute to a cleft, it can be very hard to predict whether or not it will happen. Because it happens so early in pregnancy, it’s also not something which can be prevented.

What does this mean? The baby will need one or more operations to close the gap in their mouth. These usually happen before a baby’s first birthday. They might have up to 20 more operations as they grow up!

What does this mean? All babies need to put on weight after they’re born, but for babies with a cleft it’s extra important, as they need to be strong enough for their operations. However, a cleft can make this difficult. When you drink from a straw, you close off all the gaps in your mouth to form a ‘vacuum’ which lets you bring the liquid up through the straw. This is also how babies feed from bottles when they’re young. If a baby has a cleft, the gap in their mouth can make it very difficult to form this vacuum as they can’t close everything off. It’s like if you had to drink from a straw with a hole in it. Even if you managed to do it, it would take a long time and would be quite difficult. This is why babies with a cleft often need special bottles. The gap in a baby’s mouth means they often can’t feed from a regular bottle. They need extra help and special bottles to help them feed enough to grow strong for their operations.

What does this mean? Children with a cleft palate often have ‘Glue Ear’, which muffles their hearing. Their speech may also sound different. If the cleft affects the gums, children will need extra surgery and a lot of orthodontic work to help their teeth grow properly. The gap in a baby’s mouth can also affect their hearing and speech. There are tubes which run from your ears to your throat. You can feel these when you swallow, or when your ears pop. A cleft palate can make it hard to clear these out, leading to ‘Glue Ear’. This can make muffle a child’s hearing and they may need hearing aids or another treatment. A cleft palate can also mean more air comes through the nose when someone is talking, so their speech might sound different. We all need strong, healthy gums for our adult teeth to grow through, but sometimes a cleft will go through someone’s gums. To make sure their adult teeth come through properly, they’ll need surgery and a lot of orthodontic work (braces).

My Story If you have a story about cleft, it’s your time to share! Add your photos to this slide (and add as many slides as you want!), and make some notes about what you’d like to say. We’ve included some questions here to help you get started, but you don’t have to answer them. It’s more important you tell your story your way! When did you first know about being born with a cleft? Was it something your family talked to you about? Do you remember any surgeries or treatments? What were the best and the worst bits? How does having a cleft affect you? Do you have to do anything differently? What is something about your cleft that might surprise people? Have you been involved with CLAPA at all? In what way?

Who are CLAPA? The Cleft Lip and Palate Association (CLAPA) is a small charity working to improve the lives of people born with a cleft and their families in the UK. CLAPA’s services include: Local support groups and events for young families Activity days and weekends for children and young people Special bottles and teats for new babies Advice for adults about how to get back into treatment CLAPA can only exist because of donations from the public. As a small charity, your help can make a big difference!

How can YOU help? WAYS TO HELP CLAPA There are LOTS of ways to help CLAPA! Our top three are: NUMBER 1 Each of us looks and sounds very different. Please treat everyone in your school and who you meet outside of school, just as you would like them to treat you! NUMBER 2 Tell your parents, friends, brothers and sisters etc. about what you learned about cleft lip today. NUMBER 3 - FUNDRAISE CLAPA is able to do all of the amazing things it does, because of the wonderful support of volunteers who help to fundraise. Here are some of the ways that schools help: Cake sales- yummy buns! Talent shows Sponsored activities like silences, fancy dress, sports days etc. Awareness Week – annual week in May when lots of schools, families and friends organise lots of events to tell everyone what CLAPA is! Lots more that you could do – have lots of fun! Additional Information: £1,000 – 50 places at a local family day £300 – 10 places on an activity day for young people £170 – 1 place at a weekend camp for a child born with a cleft £40 – 1 free pack of special bottles for a new family

Thank You! Remember to repeat your name and role, and ask for questions if you have time.