Annual Report of Tuberous Sclerosis Australia 2016/17

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Tuberous Sclerosis Complex (TSC) TSC affects more than 2000 individuals in Australia and thousands more carers, families and friends who live with the impact of the disease. TSC tumours can grow in any organ of the body, commonly affecting the brain, skin, heart, lungs and kidneys. TSC can cause epilepsy, developmental delay and autism. There is no known cure for TSC. TSC is not just TSC Epilepsy Autism Kidney tumours Lung disease ... and more and then there`s the fear. We have no crystal ball that can predict how any individual will be affected by TSC. This fear can be crippling. Financial Education & Work All dimensions of wellbeing can be affected by TSC Emotional Spiritual Time Physical Social Although the diagnosis of TSC is given to an individual, it ripples through the family, community and our whole society. 2
uberous Sclerosis ustralia a (TSA) TSA works to connect, inform and empower people affected by tuberous sclerosis complex as we work towards a cure for TSC. What We Do • Ensure Australians with TSC have access to the best possible healthcare • Provide up to date and accurate information to all Australians with TSC • Support individuals and families face the challenges of TSC alone • Champion an active research program in Australia that works towards a cure for TSC Our Values • Diversity - we recognise everyone`s unique experiences and contribution • Excellence - our services and activities are of high quality • Equity - we aim to provide services that are accessible by all people with TSC, wherever they live in Australia • Openness - our decision making and communications are clear and transparent • Independence - we value our independence and are accountable to TSA members • Partnership - collaboration with other organisations and individuals is critical to achieve our vision Our Team • Debbie Crosby President • Patrick Norris Treasurer • Alison McIvor Secretary • Adish Chandra Committee Member • Michael Jones Committee Member • Michelle Purkiss Committee Member • Georgina Schilg Committee Member • Clare Stuart General Manager • Kate Garrard Fundraising and Communications Lead Our Team of Medical Advisors • Dr Sean Kennedy nephrologist at Sydney Children’s Hospital • Dr John Lawson paediatric neurologist at Sydney Children’s Hospital • Dr David Mowat clinical geneticist at Sydney Children’s Hospital 3
Page 1: Annual Report Together we can creat
Page 5 and 6: SA'S chievements A summary of the a
Page 7 and 8: Gorgeous Greta is 9 years old and h
Page 9 and 10: When Oscar was seven months old, he
Page 11 and 12: Overcome barriers: Identify barrier
Page 13 and 14: Our Partners TSA works closely with
Page 15 and 16: In honour of Oliver Lumby $100 and
Page 17 and 18: Financial statements Balance Sheet
Page 19 and 20: Where funds came from Community Fun

Annual Report of Tuberous Sclerosis Australia 2016/17

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