WHAT GENES MEAN Good morning! How are you all today? ASSUMING VISITORS TO A SCHOOL HAVE BEEN INTRODUCED: As you heard, my name is XXXXX and I am XXXXXX (eg. the parent of a child with a rare medical condition / a doctor / etc.)

Genetic disorders affect one in 25 children in the UK… Ryan, aged 16 has CYSTIC FIBROSIS Conner, aged 15, has DUCHENNE MUSCULAR DYSTROPHY Pamela, aged 19, has SICKLE CELL ANAEMIA On Friday we’re going to be taking part in Jeans for Genes Day! We’ll be joining thousands of adults and children across the UK paying £1/£2 to wear their jeans to work or school for the day. You’ll be asked to wear your jeans and donate to help children like Ryan, Connor and Pamela above, who each have a different genetic condition that affects them in different ways: Ryan has cystic fibrosis, which affects his internal organs, especially the lungs and digestive system, causing them to become blocked with sticky mucus. He has to spend 1.5 hours every morning just to take medicine to keep him healthy and actively chooses activities that help alleviate his symptoms and prolong his life. There is no cure and the average life expectancy is 32 years old. – Cystic Fibrosis Connor has a different kind of disorder which means that his muscles are slowly wasting away. He used to be able to walk but now he is in a wheelchair and he needs an arm support just to be able to hold a spoon. – Duchenne Muscular Dystrophy Pamela has sickle cell anaemia. This means her red blood cells, which are usually round and flexible, become sticky and ‘sickle’-shaped, causing temporary blockages which restrict blood flow and cause her debilitating pain. She has to have lots of time off school and is unable to do all the hobbies she’d like to do. – Sickle Cell Anaemia There are over 6,000 different genetic conditions and lots of children are affected by them: 1 in 25 in the UK in fact!

Life can be very difficult for these children… Some children look different and are often stared at and teased Some children have to take extra care to live a normal life every day Other genetic conditions mean that… Some children look different and are often stared at and teased Some children have to take extra care to live a normal life every day Some children find it hard to communicate, understand and learn Some children find it hard to move around so need to use a wheelchair, or walk with sticks Some children find it hard to communicate, understand and learn

Tiana and Star’s story… WE SUGGEST USING THIS PART OF THE ASSEMBLY TO SHOW THE PAMELA FILM AT www.genesareus.org/filmlibrary/pamelasstory OTHER SUITABLE FILMS FROM OUR RANGE ARE www.genesareus.org/filmlibrary/lukesstory www.genesareus.org/filmlibrary/connorsstory OR This could be an opportunity to tell the story of your child or a child you know who is affected by a genetic condition. If you would like to tell a personal story then it should be straightforward for you to change the name at the top of the slide and replace the photo / video with one of your own.

Max’s story… WE SUGGEST USING THIS PART OF THE ASSEMBLY TO SHOW THE PAMELA FILM AT www.genesareus.org/filmlibrary/pamelasstory OTHER SUITABLE FILMS FROM OUR RANGE ARE www.genesareus.org/filmlibrary/lukesstory www.genesareus.org/filmlibrary/connorsstory OR This could be an opportunity to tell the story of your child or a child you know who is affected by a genetic condition. If you would like to tell a personal story then it should be straightforward for you to change the name at the top of the slide and replace the photo / video with one of your own.

Our money makes a real difference… Equipment, like a specialist wheelchair, or frame Nursing and care services Each of your £1 donations will help to buy special equipment for children with different problems in their bodies, like a wheelchair or frame to help them walk better or it might allow children who are not normally able to play with others the chance to go on holiday and have fun and make friends. In previous years, for example, the money raised went towards: A piece of equipment, called a Tobii Eye Gaze, to help three little girls with Rett syndrome (a regressive condition meaning they can’t move, speak or eat for themselves) to communicate with those around them A weekend away for families affected by EB, allowing children and parents to meet each other and hear from medical professionals, in a safe environment with specialist EB nursing staff on hand.  A member of staff to provide direct support and advice to children and families affected by a rare genetic condition called Bardet-Biedl syndrome (affected children suffer from vision loss leading to blindness; become obese; have kidney abnormalities, which can be life-threatening; experience developmental delay; and have difficulties with learning, speech and language, and balance and coordination). Respite or a well-deserved holiday

Our Jeans for Genes Day On Friday, we’ll be coming in to school in our favourite pair of jeans and paying £1 raising money to help children like Pamela to get the help they need to cope with their genetic condition. As well as wearing our jeans, we’ll also be … *please insert the other activities you have planned to celebrate the Day such as: holding a cake sale, hosting A ‘CUSTOMISE YOUR DENIM’ AFTERNOON, putting on a sponsored denim talent show For more ideas, please visit www.jeansforgenesday.org/planyourdayatschool/secondaryschools/fundraisingideas

Thank you very much for inviting me to come here today and I hope you all have a wonderful Jeans for Genes Day today!