Tuberous Sclerosis Comple

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Tuberous Sclerosis Complex (TSC)TSC affects more than 2,000 individuals in Australia and thousands morecarers, families and friends who live with the impact of the disease.TSC tumours can grow in any organ of the body, commonly affectingthe brain, skin, heart, lungs and kidneys. TSC can cause epilepsy,developmental delay and autism. There is no known cure for TSC.TSC can cause many different issuesEpilepsy Autism KidneytumoursLung disease… and moreand then there’s the fear.We have no crystal ball that can predict how any individual will beaffected by TSC. This fear can be crippling.FinancialEducationand workAll dimensions of wellbeingcan be affected by TSCEmotionalSpiritualTimePhysicalSocialAlthough the diagnosis of TSC is given to anindividual, it ripples through the family,community and our whole society.2
Tuberous Sclerosis Australia (TSA)TSA works to connect, inform and empower peopleaffected by tuberous sclerosis complex (TSC) as we worktowards a cure.What we do• Connect and empower people living with TSCthrough providing education events and up todate, accurate information via channels such ase-newsletters, social media and our website tsa.org.au• Provide support to individuals affected by TSC• Ensure our TSC community has access to, andknowledge of developments in TSC research• Ensure people living with TSC in Australia have accessto the best possible health care from professionalswho are committed to staying up to date withbest practice in the diagnosis, surveillance andmanagement of TSC• Connect TSC health professionals so they can sharethe latest research and medical knowledge• Raise awareness of TSC and collaborate with otherrare and genetic disease organisations to advocateon issues such as access to new treatments,coordinated health care and support services.Our visionTogether we can create a better life and more hopefulfuture for every individual living with TSC.Our values• Diversity - we recognise everyone’s uniqueexperiences and contribution• Excellence - our services and activities are of highquality• Equity - we aim to provide services that are accessibleby all people with TSC, wherever they live in Australia• Openness - our decision making andcommunications are clear and transparent• Independence - we value our independence and weare accountable to TSA members• Partnership - collaboration with other organisationsand individuals is critical to achieving our vision.Our Team• Debbie Crosby President• Patrick Norris Treasurer• Michelle Purkiss Vice President• Alison McIvor Committee Member• Michael Jones Committee Member• Miriam Chalk Committee Member• Rob Haggett Committee Member• Jackie Gambrell General Manager• Kate Garrard Fundraising andCommunications Lead• Kim Kerin-Ayres TSA NurseNew South Wales-based members of TSA Committee 2019/2020Our Team ofMedical Advisors• Dr Sean Kennedy nephrologistat Sydney Children’s Hospital• Dr John Lawson paediatric neurologistat Sydney Children’s Hospital• Dr David Mowat clinical geneticist atSydney Children’s HospitalSeanJackieJohnKateDavidKim3
Page 1: Annual ReportTogether we can create
Page 5 and 6: TSA's AchievementsThis Year 19/20Pr
Page 7 and 8: HudsonTogether, we are improving TS
Page 9 and 10: Together,Melwe are improvinghealth
Page 11 and 12: Together we can achieve so muchWe c
Page 13 and 14: Our Volunteers and Regional Contact
Page 15 and 16: Donors$1000 and overBowman, AllanBr
Page 17 and 18: Financial statementsBalance Sheet a
Page 19 and 20: Where funds came fromCOVID GvtAssis

TSA Annual Report 2020

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TSA Annual Report 2020

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