STEP UPÝ AND STEP OUT...

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1 STEP UPÝ AND STEP OUT......TO FIND A CURE FOR. HOST YOUR OWN IN MAY everydayhero.com.au/event/nfwalk

2 WELCOME Thank you for registering to host an Walk your involvement will help us deliver support services, find treatment options and ultimately a cure for families affected by neurofibromatosis. Going for a walk with old mates and new friends is a fun, healthy and social way to raise funds for an important cause. We are here to help you create a safe, well planned and effective fundraising event. In this factsheet you will find all the inspiration and instructions you need to bring your Walk to life. WHAT HAPPENS NOW? The first four steps to start are: Choose a date. Set a Fundraising Target, so you can start to work towards it right from the start. Choose a location. Find a 3 5km route to do the walk. Complete and return the Community Fundraising Event Application Form so we can issue you with a Letter of Authority to Fundraise for the Children s Tumour Foundation (CTF). CHOOSE A DATE May is awareness month so it is a great time to host an Walk. We will also be raising awareness of through the media, so if you have a story you would like to share, please let us know. SET A FUNDRAISING TARGET The aim of the Walk is to raise awareness of neurofibromatosis and raise funds to provide support services for children, adults and families affected by. Having a target gives you and your supporters a goal to work towards, so whether it is $2,000, $5,000 or $10,000, set yourself a figure and go for it.

3 CHOOSE A LOCATION The start location should be central, accessible and spectator-friendly, should have sufficient free parking, toilets, and a separate area for food/ snack tables, and should be free of charge to use. The walk should be enjoyable for all participants. It shouldn t be too hard or challenging. Good locations include coastal paths, country walkways and parks. Walk the route (or get someone you trust to) and make sure that it is a clear route and easy for all participants to enjoy. It should be kid, pet, wheelchair and pram friendly. On average Walks are 3 5 kilometres long. The distance is not important; it is about the quality of the walk. A loop route is preferred so that walkers can start and stop at the same location. Always have the Walk in an area that is accessible to emergency vehicles. Ensure that the route is clearly marked so participants will not get lost. Use small signs for direction and distance travelled. If the Walk is longer than 3 kilometres, signage for shorter turnaround points should be marked. All signage should be removed at the end. If a route is longer than 3 kilometres, having a vehicle circle the Walk to assist those who may not be able to walk the entire route is advisable. Start looking for a location straight away. You may need to request a permit or complete an application in order to use the facility you choose. All applications are to be handled by the Walk Host, and all fees must be approved by the Children s Tumour Foundation.

4 THINGS TO CONSIDER Do you want to play music? You may need to check that you are allowed to in your location. Is a food permit needed? Will the location allow balloons? Will the location allow you to mark the ground with chalk? Is the location, including the restrooms, accessible to people with disabilities? Is the location family and pet friendly? Does your planned date conflict with other community events (e.g. sporting events, local fairs, holidays, other charity events, etc.)? INVITE YOUR FRIENDS AND START FUNDRAISING Once we have approved your application to fundraise, we will set up an Everyday Hero Fundraising Page for your Walk. Send this out to everyone you know, telling them that you are hosting an Walk on behalf of the Children s Tumour Foundation. Send s, post on Facebook, tweet, and make sure everyone knows the date. Most importantly, make it personal. Personal invites are the most effective way to secure commitment from friends and family. Make sure they know your personal story and reason for getting involved. Ask them to bring some friends along and ask them to fundraise. Remember most people want to help and most people like to be invited to events. Consider sending invites to people outside of your social network too, like doctors and nurses, school teachers and politicians. There is no entry fee, so ask your friends and family to donate to your page in lieu of an entry fee. Ask the people that are going to give you the largest donation first. That first donation will set the bench mark for the rest of your donations. If you want to control this, you can make the first donation yourself. You can raise more money on the day with a raffle or an auction. Ask local businesses to donate some prizes. A gold coin donation for a sausage sizzle could also raise more funds. Ask your local butcher for some sausages and the local supermarket for bread and soft drink. ASK FOR HELP Don t do it all on your own. Recruit your friends, family and colleagues to help with running the event and with fundraising. Planning the event should be fun!

5 THE CAUSE The Children s Tumour Foundation supports individuals and families affected by a genetic condition called neurofibromatosis or. is the umbrella name given to three genetic disorders that affect nerve tissue: 1, 2 and Schwannomatosis. Put simply, it means your tumour suppressor does not properly function and every nerve cell in your body has the potential to become a tumour. It is difficult to describe as no two people with are affected in the same way, even within one family. Diagnosed most commonly in children and young adults, does not discriminate between race, gender or ethnicity. It is a life-long condition affecting 1 in every 3000 births. While half of all affected people inherit the condition, new cases can arise spontaneously through mutation of the genes. Symptoms of can be mild, allowing patients to live normal and productive lives. However it can also be debilitating and life-threatening. causes tumours to grow on the nerves but it affects everyone differently. Some have external tumours that can be disfiguring while others have internal tumours that can lead to learning disabilities, cancer, blindness, deafness, severe pain and amputation of limbs. Despite the discovery of the genes for 1, 2 and Schwannomatosis there is still no cure.

6 FAMILIES NEED YOUR HELP A child with neurofibromatosis is born every 3 days in Australia. But with a diagnosis comes a great deal of uncertainty, as there are few treatment options and no cure for. Parents live in fear of their child s future. Australia has some of the best researchers in the world focused on finding treatments and a cure for. If your child is in Sydney or Melbourne there are world class doctors available to consult with. Parents living outside these areas have virtually no expert help. At 16 years old, teenagers with transition from children s treatment programs to adult services where there is currently little support. The majority of people in Australia with live with no local expert health care and no support services. There is a desperate need for a national network of support services for both children and adults alike. CTF is committed to raising funds for a national network of support services in Australia. We have established our first part time support worker in NSW and we are aiming to raise funds to extend this service. To do this, we need you and every member of the community to Step up and Step out and help us raise funds to create this support network.

7 THE COMMUNITY SPIRIT Townsville Christine James from Townsville (QLD) hosted the very first Walk in Australia in Christine s husband has a mild case of 1 and her two young sons Ethan (3) and Nate (2) also have. Christine found six other families affected by in her area who were keen to join in raising awareness about the condition. Expecting only 30 people to attend, they were amazed to have over 80 community members join their Walk along The Strand. Friends and family were joined by the local councillor and some of the local teachers. A sausage sizzle for a gold coin donation helped raise additional funds and create a fun celebratory atmosphere. The Walk raised awareness, connected families and raised $2,500 through the CTF fundraising page. Broken Hill Broken Hill also hosted an outback Walk. Mia Lawrence and her family ran the event in support of her nephew Hamish who has 1. Hamish s 1 symptoms include: significant learning difficulties, café-au-lait spots, Lisch nodules on the optical nerve, progressive lower limb weakness, osteoporosis and a large number of tumours (Neurofibromas and plexiform neurofibromas) growing on his spine and body. Hamish has to travel to Sydney frequently for MRI scans, tests and monitoring. Hamish is a typical but extraordinary 9-year-old boy a happy, kind-hearted, easy going kid who enjoys riding his motorbike and pushbike, playing cricket, going pigging, shooting targets with his bow and arrow, swimming and watching AFL footy (passionate Magpie supporter). Hamish brings so much happiness to his family and wins many hearts along the way with his contagious smile, sense of humour and cheeky personality. The Broken Hill community came out in force to support Hamish with 82 participants joining in the Walk. They raised $1000 on the day through a BBQ, raffle and donations. This was on top of the $5,500 raised through the Walk fundraising page. In addition to the fundraising they raised awareness and introduced families with to each other for continued support.

8 WHERE THE MONEY GOES Your fundraising efforts will help advance research, raise awareness and fund support services for children, adults and families affected by. $50 will pay for a Genetic Counselling phone call for those affected by $150 $173 $500 $2,000 $10,000 will pay for a child with to go to a Family Camp and meet other children with will pay for a Support Worker for a day so they can provide practical guidance and information on will go towards clinical trials, where new drugs can be tested to find a cure could help a family with travel expenses to see medical professionals will help pay for a Support Worker to visit regional Communities in a national roadshow

9 INSURANCE All walks organised on behalf of the Children s Tumour Foundation are insured by the Foundation. Insurance is basic coverage only. If your venue requires an insurance certificate, please contact Lee Mackie or Noeleene Yap on Examples of things NOT covered: alcohol, rock climbing walls, bouncy castles, etc. MAKE YOUR FUN This is a great social opportunity for friends old and new to get together for a chat, support and a good laugh. At the end of your Walk create a social environment for everyone to celebrate the successes of the day. You could do this by: Playing music Having a sausage sizzle ask your local butcher for a donation of sausages and collect gold coin donations to go towards your fundraising efforts Having a picnic ask your friends to bring a share plate Having a raffle ask local businesses to donate prizes Putting up some balloons and signs you can print posters from our website or get the kids involved and have some fun making your own posters Other ways to create more fun in your event are: Face painting Balloon characters Kids party games e.g. pass the parcel, statues School races for kids and adults e.g. egg and spoon race, three-legged race, wheelbarrow races Create a fancy dress theme for your walk Some live music Don t forget to take down all your balloons and signs and to take bin bags. It is important to leave your event space as it was found.

10 SAY THANK YOU Remember to say thank you to everyone who got involved with setting up, running, participating and sponsoring or donating to your Walk. Submit all your funds raised through the fundraising portal. We want all of your supporters to have a great time and to want to come back again next year. LET S STEP UP Ý AND STEP OUT FOR everydayhero.com.au/event/nfwalk CHILDREN S TUMOUR FOUNDATION OF AUSTRALIA TEL: FAX: WEB: IO@AA.ORG.AU LIKE US ON FACEBOOK