Annual Report of Tuberous Sclerosis Australia 2016/17

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ship eadership eport Debbie Crosby, President and Clare Stuart, General Manager It has been another amazing year at Tuberous Sclerosis Australia and all made possible by our part of running TSA is raising the funds needed to achieve our goals. We are so grateful for each and every person who chooses to donate to TSA, host a fundraising event or support one of our TSC Heroes in events around Australia. This year saw a major milestone in our TSC Heroes fundraising team. Formed in 2014 by the Place family, the original TSC Heroes came together again in November 2016 at the Western Sydney a half ironman distance triathlon, joined by many of his family and friends along with TSC dads Elliott Cunnew and Anthony Crosby. This event raised over $30,000 and took the total raised by TSC Heroes to over $100,000. These funds have allowed TSA to maintain and improve our information and support services. These include improving the availability of our TSC Information Service, the only service of its kind in Australia allowing people living with TSC to call for accurate information, connect to health professionals who know about TSC and someone to listen who knows what life with TSC is like. We’ve also been able to update our information continues to be one of the hardest aspects of TSC to live with. 90% of people with TSC experience seizures and anti-epilepsy medication alone is often not able to provide relief. Ongoing research into medicinal cannabis, mTOR inhibitor medicines and improvements in epilepsy surgical techniques have with TSC. Our April 2017 issue of Reach Out brought up to date information on these new treatment hundreds of TSC families and health professionals. This year we also received funding from Novartis go to Dr John Lawson for generously giving his time to do this session. It provided a great overview of medicinal cannabis research and issues and allowed participants to ask questions directly from an expert in this area. The ability to participate in online events and watch video recordings at a time convenient to them means more people in more parts of our big country can access accurate and up to date TSC information. We took time this year to refocus on how we can need of Australians living with TSC. Our 2016 survey emphasised that day to day life with TSC is full of challenges including accessing TSC expert medical care as well as mental health, education and disability support. Despite major advancements in the medical treatments available for TSC, there is so much more we can do. We have refreshed our strategic plans to be more ambitious and this annual report describes our key priorities. The management committee is excited about this next phase for TSA and the ways that we can help to make the lives of people with TSC better future. Our organisation has grown and changed since it was established in 1981. At TSA's core has always been a dedicated group of volunteers. Thank you to our management committee members, our regional contacts and our dedicated fundraisers. We are also so grateful to have the ongoing support of our TSC Professionals Network who give their time to our projects including presenting at education events, reviewing our publications. This year we welcomed our fundraising knowledge and experience to our team. Having the resources to complete this work is the largest challenge we have. We are passionate about increasing the number of people and organisations involved in our cause. If you can help us to talk to a new group of potential supporters, we’d love to work with you. Thank you again for supporting TSA this year. We’re proud of what we have accomplished and look forward to the future. 4
SA'S chievements A summary of the achievements of the Australian TSC community since TSA`s formation in 1981. TSA founded as Australasian Tuberous Sclerosis Society First issue of TSA's regular magazine Reach Out published First social picnics held for families with TSC First family conference weekend held in Sydney with attendees from all around Australia National Roadshow brings up to date TSC information to three Australian cities TSA is a founding member of Tuberous Sclerosis Complex International TSC clinic opens at Sydney Children's Hospital bringing together specialists disciplines to provide a whole patient approach to medical care Produced You Are Not Alone the stories of four Australian families living with TSC TSA funds genetics project providing genetic testing for TSC and improving our understanding of the genetic basis of the disease 2nd Australian TSC clinic opens in Brisbane at The Mater Children's Hospital First TSC two day combined meeting with Sydney Children's Hospital 30th Anniversary Gala Ball held in Sydney, raising over $80,000 Australia site in Exist 1, international clinical trial into new medicines for TSC The inaugural Elizabeth Pinkerton Memorial Award is given to Dr David Mowat, to recognise to improve the lives of families in Australia 1981 1982 1986 1990 2006 2007 2011 2017 2016 2015 2014 2014 2013 2012 Launch of TSA webinars providing updates on new treatments and discoveries Four Australian sites participate in 1st international clinical trial of medicinal cannabis for epilepsy in TSC TSA conducts second survey TSC family survey to gain further insights about how family and how TSA can best support them TSC Heroes reach $100,000 in donations for TSA Development of TSC professionals network Published the 100th issue of TSA's Reach Out issue 1982 Combined national medical and family conference held in Sydney The TSC Heroes team is founded, uniting fundraisers around Australia TSA provides funding to Sydney University for the health economics study, examining out of pocket health care costs of families with a child with TSC Lady Cilento Children's Hospital in Brisbane joins major European clinical trial preventing the onset of seizures in infants with TSC and reducing the rates of developmental disabilities. TSA completes the TSC Family of its kind in Australia and New Zealand First Perth TSC Educational Conference Australian Pharmaceutical (PBS) funds mTOR inhibitor medicines, a lifesaving new treatment for brain and kidney tumours in TSC. TSA led the consumer advocacy project to help the decision makers understand the impact this medicine has on the lives of those TSC Melbourne TSC Information Day Resource directory project is completed, providing detailed information about TSC tailored to Australia for the TSA provides over $200,000 in funding for clinical trial of a topical cream to treat and prevent TSC skin tumours at Sydney Childrens Hospital 5
Page 1 and 2: Annual Report Together we can creat
Page 3: uberous Sclerosis ustralia a (TSA)
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

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