Tuberous Sclerosis Australia Annual Report 2015-16

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Tuberous Sclerosis Complex (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. Tuberous Sclerosis Australia works to connect, inform and empower people affected by tuberous sclerosis complex as we work towards a cure for TSC. Our Team Debbie Crosby, President Patrick Norris, Treasurer Alison McIvor, Secretary Adish Chandra, Committee Member Hayley Hill, Committee Member Michael Jones, Committee Member Michelle Purkiss, Committee Member Georgina Schilg, Committee Member Clare Stuart, General Manager Chelli Edri, Fundraising, Communications and Events Manager Alice O’Donnell, TSC Professionals Network Manager Regional Contacts A vital part of our volunteer team, the regional contacts live throughout Australia and work with local families to share information and experiences. NSW: Janiffer Reynolds and Sally Nicholson WA: Nicole Stone QLD: Fiona Hiatt, Fiona Crocker and Christie Herbert VIC: Narelle Kerr TAS: Georgina Schilg Medical Advisors Dr Sean Kennedy, Nephrologist Dr John Lawson, Paediatric Neurologist Dr David Mowat, Clinical Geneticist TSA works with Photos: Top: Murray Leikis, Clare Stuart and David Mowat at the International TSC Research Conference in Windsor, UK. Above: Debbie Crosby with her Mum Maria and her daughter Sophie at Lizzies’s Lunch 2016. Front cover photos: Clockwise from top: Our TSC Heroes team at HBF Run for a Reason in Perth, Liam from TAS, Lachlan and Koby from QLD, Matilda, VIC. Tuberous Sclerosis Australia 2
President’s Report Bringing together the Australian TSC Community From Debbie Crosby, President, and Clare Stuart, General Manager Tuberous Sclerosis Australia’s major project this year was the 2015 Australian TSC Conference. This event brought together health professionals, people with TSC and their families to learn more about TSC and set goals for what our community can achieve together. Some people met others living with TSC for the first time ever. Stories were shared and friendships started. Photo: Debbie and Clare When TSA was founded in 1981 most people with tuberous sclerosis had never met another person with the condition. Picnic days were expanded to seminar days and family weekends. Combined events with health professionals have proven a successful approach to sharing TSC information and building relationships. In the coming year we will seek to improve access to our events by piloting webinarstyle online education events. Bringing the Australian TSC community together is still at the core of what we do. Our mission is to connect, inform and empower people affected by tuberous sclerosis complex as we work towards a cure for TSC. This annual report describes our achievements and highlights of the past year and where we are headed in the future. We’d like to thank our staff team this year. Clare Stuart, our general manager, has done outstanding work this year and her commitment and passion for TSA is always evident. We are excited to welcome Chelli Edri, our new Fundraising, Communications and Events Manager. We look forward to working with Chelli and achieving our fundraising goals. Our volunteer team is vital to TSA’s success. Last year we had four new management committee members join us: Michael Jones (NSW), Michelle Purkiss (NSW), Jodie Conduit (QLD) and Alison McIvor (VIC). Thank you for bringing a new perspective and fresh ideas to TSA, and particularly to Alison for taking on the sizeable role of secretary. I would also like to acknowledge the wonderful work of our volunteer regional contacts the very important work they do in keeping people connected all around Australia and all 3 of the volunteers who support our organisation with specific projects and administration. We are grateful to the health professionals who donate their time: as our medical advisors; by reviewing our information pages; and speaking at our events. The volunteer steering committee for our conference designed a program for the medical stream that engaged health professionals from multiple disciplines and provided time for sharing perspectives and ideas. Dr Elizabeth Thiele and Dr Lisa Henske who travelled from the USA were fantastic and their talks provided us with so much information, and their passion and commitment as TSC specialists was felt by everyone. Dr Thiele said she felt privileged to attend the conference, and was impressed by our small organisation bringing together so many people affected by TSC and so many interested health professionals. Most importantly, thank you to all the fundraisers and donors who contributed their time and money to TSA. Without these generous donations TSA would not be able to do the work it does. We would particularly like to acknowledge Sue and Ross Pinkerton for their organisation of Lizzie’s Lunch, now in its third year raising over $16.000 for TSA, and their personal contribution to the Lizzie Pinkerton Memorial Fund. All of our fundraisers, and especially the TSC community inspire and encourage others to support TSA. We look forward to TSA continuing to bring together the diverse Australian TSC community and welcome all feedback and ideas. With your help we know it will be another exciting year for TSA. Tu
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Tuberous Sclerosis Australia Annual Report 2015-16

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