STEP UPÝ FUNDRAISING TODAY DO IT YOUR WAY AND START ...TO HELP FIND A CURE FOR NF.

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1 STEP UPÝ...TO HELP FIND A CURE FOR NF DO IT YOUR WAY AND START FUNDRAISING TODAY

2 WELCOME Thank you for Stepping Up to help find a cure for NF your involvement will help us deliver a national network of support services, find treatment options and ultimately a cure for children and adults affected by neurofibromatosis. A diagnosis of NF presents many challenges and no two people with the condition are affected in the same way. Just as everyone has different skills and strengths, children and adults diagnosed with NF have different experiences with the disease. We are therefore providing a suite of tools that will help everyone use their own unique talents to raise funds and awareness for NF. We are here to help you create a safe, well planned and effective fundraising activity. In this factsheet you will find all the inspiration and instructions you need to bring your Step Up for NF event to life. WHAT HAPPENS NOW? The first four steps to start are: Choose your event or activity. Set a fundraising target. 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). Set up your fundraising page ( CHOOSE A DATE You can Step Up for NF with ANY event or idea at ANY time of the year. May is NF Awareness month so it is a particularly great time to create a Step Up for NF campaign. We will be running our Step Up NF Awareness Campaign at this time which may provide you with a good platform to share your story. But no matter when you choose to stage your event, you ll find all the tools and support you need at

3 SET A FUNDRAISING TARGET The aim of Step Up for NF is to raise awareness of neurofibromatosis and raise funds to provide support services for children, adults and families affected by NF. Having a target gives you and your supporters a goal to work towards, so whether it is $200, $5,000 or $20,000, set yourself a figure and go for it. INVITE YOUR FRIENDS AND START FUNDRAISING Let everyone know that you are Stepping Up for NF on behalf of the Children s Tumour Foundation. Send s, post on Facebook, tweet, and make sure everyone knows the event you are taking part in and the date. Most importantly make it personal. Personal invites to sponsor you are the most effective way to get commitment from friends and family. Make sure they know your personal story and reason for getting involved. Share your progress towards your goal. If you are running in a marathon, share your training milestones and your challenges. Remember most people want to help and support you. MAKE YOUR STEP UP FOR NF FUN So you have chosen to complete an ocean swim, run a marathon or bake some cakes. Whatever you have chosen to do, make it social! Get some friends to join in the challenge and make it fun. Get them to Step up for NF too. You can increase your sponsorship funds by: Getting sponsors to choose what you wear on the run Getting sponsors to double their donation if you achieve a time goal Having a pre-event BBQ or dinner Getting some prizes to raffle Getting someone to donate prizes for everyone who donates over $25 SAY THANK YOU Remember to say thank you to everyone who got involved with setting up, running, participating and sponsoring or donating to your Step Up for NF campaign. Submit all your funds raised through the fundraising portal. We want all of your supporters to have a great time and to help again with future campaigns.

4 THE CAUSE The Children s Tumour Foundation supports individuals and families affected by a genetic condition called neurofibromatosis or NF. NF is the umbrella name given to three genetic disorders that affect nerve tissue: NF1, NF2 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 NF are affected in the same way, even within one family. Diagnosed most commonly in children and young adults, NF 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 NF genes. Symptoms of NF can be mild, allowing patients to live normal and productive lives. However it can also be debilitating and life-threatening. NF 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 NF1, NF2 and Schwannomatosis there is still no cure.

5 NF FAMILIES NEED YOUR HELP A child with neurofibromatosis is born every three days in Australia. But with a diagnosis comes a great deal of uncertainty, as there are few treatment options and no cure for NF. 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 NF. 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 NF transition from children s treatment programs to adult services where there is currently little support for adults with NF. The majority of people in Australia with NF 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 officer in NSW and we are aiming to raise funds to extend this service right across Australia. But to do this, we need you and each member of the NF community, to Step Up and help us raise funds to create this support network.

6 WHERE THE MONEY GOES Your fundraising efforts will help advance research, raise awareness and fund support services for children, adults and families affected by NF. $50 will pay for a Genetic Counselling phone call for those affected by NF $150 $173 $500 $2,000 $10,000 will pay for a child with NF to go to a Family Camp and meet other children with NF will pay for a Support Worker for a day so they can provide practical guidance and information on NF 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 NF Communities in a national roadshow

7 STEP UP TO THE RIGHT EVENT Some people have a really clear idea of what they can do to raise money. They are good at running, swimming or baking, and their decision to Step Up to a new challenge in their preferred discipline is easy. But some of us might not know where to get started, so here are a few ideas: Walk 3kms Run a Marathon or a half marathon Complete a Triathlon Swim in a surf ocean race Aerobics-athon Ride your bike 10km, 50kms, or 200kms Host a stationary bike challenge at your local gym Host a dinner Host a movie night Have a bake off Host a quiz night Host a poker tournament Run 5kms Quit something you love or a habit for a month like chocolate or coffee Complete an Ironman Swim-athon Step Up Aerobics Challenge Host a treadmill challenge at your local gym Host a BBQ Host a morning tea Host an Auction Sell things you make at a market Wash cars in your office Sell chocolate in the office Fundraising is always more fun with company. Chat with friends and find out if they are going to an event that you can join. Connect with local groups in your chosen discipline and see if there are any local events that you would like to join. Alternatively you can browse event calendars such as Step up and help us find a cure for NF.

8 STEP UPÝ...TO HELP FIND A CURE FOR NF everydayhero.com.au/event/step-up-for-nf CHILDREN S TUMOUR FOUNDATION OF AUSTRALIA TEL: FAX: WEB: INFO@NFAA.ORG.AU LIKE US ON FACEBOOK