Friday 1st August. School s Information Booklet. Thank you for making a difference. jeansforgenes.org.au

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1 Thank you for making a difference School s Information Booklet Friday 1st August jeansforgenes.org.au Proudly supporting Children s Medical Research Institute Celebrating 21 years of Jeans for Genes

2 1 in 20 Aussie kids is born with a birth defect or genetic disease. Contents It will take 20 out of 20 Aussies to help find a cure. Welcome to Jeans for Genes About CMRI... 5 What is a Gene?... 6 Erin s Story What Your Support Will Achieve... 8 Planning Your Event On the Day Checklist Fundraising Ideas What to do after Jeans for Genes Day

3 Welcome to Jeans for Genes 2014 About CMRI Jeans for Genes is turning 21 on Friday 1st August! Thank you for getting involved! This Jeans for Genes Day, classrooms everywhere will be awash with denim in a united stance against childhood disease... If you have ordered FREE Jeans for Genes colour pencils, these are yours to sell or give out as part of your school s fundraising activities. The merchandise you don t use is yours to keep. Your school s support will go a long way to helping the scientists at Children s Medical Research Institute unravel cures to a range of childhood medical conditions. There s no better feeling than knowing you re helping future generations of kids have brighter futures all while having fun! The vital work of the scientists at Children s Research Medical Institute (CMRI) is carried out with the single aim to improve and extend the lives of children everywhere. Currently, 1 in 20 children is born with a birth defect or genetic disease. That s over 12,000 children born in Australia each year. CMRI is dedicated to changing that. Medical research is the only way to discover cures for conditions affecting children, such as cancer, epilepsy and a range of genetic defects. CMRI s vital work does not receive guaranteed government funding and relies on community support. Find out more about CMRI online at cmri.org.au. Like us on Facebook and visit jeansforgenes. org.au for exciting news, updates and downloadable resources... Every dollar you raise or donate will help build the cornerstones for tomorrow s cures and treatments for the benefit of children everywhere. 4 5

4 6 What is a Gene? All of the information needed to make a person is contained in the DNA of our cells. DNA can be thought of as a long stretch of instructions telling the cells in our body how to do their job, whether it s lung cells helping us breathe or heart cells keeping a rhythm. There are three billion bits of information contained in the DNA of each person enough information to fill 200 phone books and this information is divided into genes, each one the blueprint for a particular piece of the cell. If only one bit of DNA is wrong, the gene can t function this results in a genetic disorder. There currently exists a range of genetic disorders for which no cure has yet been developed. These include cancer, cystic fibrosis, muscular dystrophy, blindness, epilepsy and rarer yet equally devastating diseases. Understanding our genes will allow us to treat and prevent currently incurable conditions, offering real hope for children today and for future generations. Erin s Story - Dean Hutchison CMRI has pioneered treatments for many types of conditions affecting children, including neonatal intensive care. Here s the difference that has made to one family. Meet my little girl Erin. She s the most outgoing, bubbly and sociable child I ve ever known. And we almost lost her. In 2006, my wife Kim was pregnant. We were doubly thrilled because we knew this was Kim s only chance to have a baby. When she woke one night and said, I m feeling a bit off, I wouldn t normally have worried about it, but something made me sit up and take notice. On the way to the hospital, things went from not great to extremely bad in a matter of seconds. Kim was screaming in agony and when we arrived she started fitting. The doctors gave me two choices stay at that hospital and save Kim but lose our baby, or risk moving them to Westmead to save them both, but with a 50/50 chance that neither of them would make it there. I m lucky I made the right choice. Kim had an emergency C-section as soon as we got to Westmead, at only 25½ weeks into her pregnancy. She was placed in an induced coma while Erin was fighting for her life, so for three days I didn t know whether either of them would make it home. Erin was so tiny just 597 grams that she was given only a five per cent chance of surviving. It was a heartbreaking percentage to deal with, but she was just a born fighter. Imagine a baby so small that my wedding ring could travel all the way up her arm to her shoulder. That was Erin. Even while Kim was in a coma and Erin was struggling for every breath, I maintained an unusual level of optimism. Still, most nights were spent worrying and hoping. My way of coping was to immerse myself in information. Erin s specialists credited CMRI with some of the treatments we went through. CMRI s research went a long way to establishing neonatology as a subspecialty. They helped pioneer neonatal intensive care units a key element in the improved survival of premature babies like Erin; they helped introduce the principles of newborn care; and conducted cardiopulmonary studies in newborns. A while after Kim and Erin came home from hospital, I joined the team at CMRI as their Payroll Officer. I d always donated to CMRI and now I had real reasons to be grateful for their work. 7

5 What Your Support Will Achieve Your support on Jeans for Genes Day helps the scientists at Children s Medical Research Institute create a healthier future for all children. 8 Every $ 2 Fight cancer A gold coin will buy enough of the crucial enzyme needed to test the blood of one patient for aggressive types of cancers. Every $ 10 Crack the causes of blindness Our eye genetics group has already discovered 12 genes that cause blindness in children. Ten dollars gives our scientists 200 mini test tubes to help discover more. Every $ 5 $ Treat epilepsy Buy a badge and CMRI scientists can buy a plastic 96-in-one test tube to screen 96 potential epilepsy drugs at once. The more you raise the closer we get to finding vital cures and treatments that will save children s lives. Every 500 $500 Cure liver disease Gather a team of volunteers and help sell merchandise on the streets across Australia and you could raise enough money to prepare a sample of cells needed to develop a treatment for liver disease. Currently the only hope for infants born with this disease is a liver transplant, but CMRI scientists have made a major breakthrough and are on their way to clinical trials in seriously ill patients. Every $ 1K Make a new discovery Hold your own Jeans for Genes event and you ll help our scientists test a new drug that could treat cancer, epilepsy or other neurological conditions. A drug we developed to treat epilepsy may also cure kidney disease an unexpected discovery that has the potential to save millions of people from the need for transplants and dialysis. 9

6 Planning Your Event On the Day Checklist One Two Spread the word Increase awareness of Jeans for Genes Day by putting up posters around your school. You can download these from jeansforgenes.org.au/download If you ordered free Jeans for Genes merchandise, sell or give them out as part of your school s fundraising activities. Please ignore any pricing information on the items. Any merchandise you don t use is yours to keep! 3 Hold your Jeans for Genes Day fundraising event Ideas are limited only by your imagination... See the ideas on page Collect donations from students and parents Be sure to keep the money in a safe place and follow the instructions on how to return funds on page Tell everyone how their support is making a difference Share the information in this booklet with students, parents and teachers to show how your support is helping children everywhere. 3 Most importantly, have fun! Three Remind parents about Jeans for Genes Day Send a letter to parents to let them know about your school s plans for Jeans for Genes Day. A sample letter and student reminder slips are available from jeansforgenes.org.au/download Four Tell the media Issue a media release to your local paper and tell them about your school s fundraising event. A sample media release is available from jeansforgenes.org.au/download 10 11

7 Fundraising Ideas Ideas are limited only by your imagination! Here are just a few... Finding cures for childhood diseases Friday 1st August What to Do AFTER Jeans for Genes Day Thank you for participating in this year s Jeans for Genes campaign and helping to improve the health of future generations of children everywhere. Hold a denim themed mufti day and ask students to make a gold coin donation Please give generously and remember to wear your jeans! Bank the money you have raised by: Hold a denim themed bake sale: make blueberry cupcakes or denim slices and sell them for a gold coin donation One Lodging directly at any Westpac branch using the deposit slip provided with your cover letter Credit card or bank transfer via jeansforgenes.org.au (please include your supporter number) Hold a merchandise stall with the free Jeans for Genes stationery sent to you and sell the items Cheques sent to Locked Bag 23 Wentworthville NSW 2145 (please include your supporter number) Give away free merchandise with any gold coin donation Host a BBQ or sausage sizzle for your school jeansforgenes.org.au Proudly supporting Children s Medical Research Institute Celebrating 21 years of Jeans for Genes Two Keep any unsold merchandise This is yours to keep after Jeans for Genes Day. Feel free to use it in your school or you could even donate it to a local or overseas community group. Organise a fun run or team challenge and ask people to donate to participate or sponsor others Hold a denim fashion parade you can even ask the students to design their own denim outfits! Three Send Us Photos We would love to see what your school did on Jeans for Genes Day and to hear how much you raised! us at khorvarth@cmri.org.au Have a Jamm for Genes organise a music concert and invite parents to watch (entry by donation) Four Save the Date! Jeans for Genes is held on the first Friday of August every year. Next year, it will be on Friday 7th August

8 Thank You for Getting Involved in Jeans for Genes Day! You are helping create a brighter future for children everywhere. Thank you for your support! 14 15

9 Thank you! postal: Locked Bag 23, Wentworthville NSW 2145 Australia freecall: 1800 (GENIES) cmri.org.au jeansforgenes.org.au Proudly supporting Children s Medical Research Institute Celebrating 21 years of Jeans for Genes