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The impact of your supporton improving health care4412Information sheetsfor health careprofessionalsHealth careprofessionalsThanks to funding from nib foundation, TSAdeveloped two new information sheets forhealth care professionals (such as maternalfetal medicine specialists, midwives, fetalecho cardiologists, geneticists and paediatricneurologists) who may be involved insupporting families with possible TSC in anunborn baby and families whose child has beennewly diagnosed with TSC.1ElizabethPinkertonMemorial AwardMany TSC doctors go above and beyond tohelp TSC patients and each year TSA presentsthe Elizabeth Pinkerton Memorial Award toexpress our gratitude. In 2019 the award waspresented to Dr Fiona McKenzie, Geneticist atthe King Edward Memorial Hospital for Womenin Subiaco, Western Australia. Dr Mc Kenzie wasnominated for her long-term perseverance inassisting one TSC adult to search for the causeof their mosaic TSC and for her consideredcounselling to families. Dr McKenzie said she feltvery privileged to have been nominated for thisaward and thanked TSA for choosing her.“Dr McKenzie counselled us when we were planningto concieve and have our first child. We wouldn't havehad the confidence to go forward without her advice."Anon, TSC family Western Australia.TSC familiesparticipated in a globalclinic trial for medicalcannabis for epilepsy1NewThanks to Australian GovernmentTSA nursegrant funding, TSA is involved in thePatient Pathways Program managedby the Centre for Community-DrivenResearch. The aim of this trial, whichis being run in 11 health organisations, is to prove the need andusefulness of telehealth services. Our TSA nurse Kim has been providinga telehealth nurse service with our TSC community since joining theTSA team in July 2019.142Surveys conductedChildren and young people with TSC in NewSouth Wales have been able to take part in theinternational clinical trial evaluating the use ofEpidiolex® in treating their seizures. This PhaseIII global study, allows 210 patients access toEpidiolex. Thank you to the 14 Australian TSCfamilies who are participating, through SydneyChildren’s Hospital, Randwick and to our TSAMedical Advisors for ensuring our Australianfamilies were included in this importantresearch. So far the results of this trial arelooking positive.8The new diagnosis information sheets havebeen distributed to hundreds of health careprofessionals to ensure they have accurateand up to date TSC information. This willhelp improve the diagnosis experience forTSC families."The new TSC information sheets tailored for health care professionalsare a very useful resource. They will help support health professionals withaccurate and up to date information on the condition. TSC is a rare diseasewith low levels of understanding for most health professionals. The resourcesare informative, balanced with accurate information, and are nationallyapplicable.” Dr John Lawson, Paediatric Neurologist, Sydney.New health careprofessionals added to theTSC Professionals NetworkThe TSC Professionals Network is an unpublished network listing ofhealth care professionals that have an understanding of, and interestin, managing TSC. The network is frequently used when a person withTSC is seeking out a TSC expert or a second opinion, and when a healthprofessional is looking for expert advice to assist them in caring for aperson with TSC. Many of the professionals who agreed to be added tothe network this year were recommended by our community in the TSASurvey 2019.TSA invited our TSC community to provide their feedback and input onTSA’s work and share ideas for how we can best serve their needs. Thiscovered feedback on our information services and our programs andservices that help improve health care for Australians living with TSC.From the feedback we know that geographical remoteness for thosenot living in a major city is a significant issue. To improve support forfamilies living in regional areas, TSA will focus on helping to bridge thisgap through our telehealth nurse service and increased digital services,to ensure everyone in Australia, no matter where they live, can accessquality information, support and care.
Together,Melwe are improvinghealth care for people like Mel.Together, we are improving healthcare for people like Mel.Melinda, who prefers to be known as Mel, is in her 40sand enjoys life on the Gold Coast in Queensland. SheMelinda, lives with who TSC prefers but, by to her be own known admission, as Mel, did is in little her 40s toandacknowledgeenjoys lifeherongeneticthe GolddiseaseCoast inforQueensland.most of herShelifelivesand hadwithlargelyTSC but,beenbyableher ownto forgetadmission,aboutdidit.little toacknowledge Diagnosed with her TSC genetic at three disease years for of most age, Mel of her has lifeand experienced had largely few been TSC signs able to and forget symptoms about it. asidefrom angiofibromas, for which she had undergoneDiagnosed with TSC at three years of age, Mel hassuccessful laser treatment. Mel’s parents hadexperienced few TSC signs and symptoms asideconnected with TSA and the TSC community but Melfrom angiofibromas, for which she had undergonehad never felt the need to connect.successful laser treatment. Mel’s parents hadconnected However recently, with TSA having and the undergone TSC community some intensive but Melhad and aggressive never felt the treatments need to connect. for breast cancer, Melfound that the TSC markings on her face had becomeHowever recently, having undergone some intensivemuch more visible than before and she was convincedandshe hadaggressivedone somethingtreatmentstoforcausebreasta flarecancer,up.Melfound that the TSC markings on her face had becomemuch A previous more operation visible than in her before 30s and had she also was shown convinced signsshe of TSC had on done her kidneys something and to liver. cause And, a flare this up. time around,in preparing for radiation treatment for her breastA cancer, previous her operation health professionals in her 30s had had also told shown her that signsof scans TSC of on her her lungs kidneys had and revealed liver. And, she has this TSC-relatedtime around,in lymphangioleimyomatosis preparing for radiation treatment or LAM. Mel for had her breast no ideacancer, what this her even health was. professionals She decided had it was told time her to that takescans action of and her get lungs better had informed revealed about she has her TSC-relatedTSC.lymphangioleimyomatosis or LAM. Mel had no ideawhatMel visitedthis evenTSA’swas.websiteShe decidedas a startingit waspoint.time to takeactionDiscoveringand getthatbetterTSA nowinformedhas itsaboutownhernurse,TSC.shesent off an email asking if the nurse might knowMel what visited might TSA’s have website caused her as a skin starting flare point. up and whatDiscovering she could do that about TSA it. now Kim has Kerin-Ayres, its own nurse, TSA’s she nursesent contacted off an Mel email and asking discussed if the some nurse of might the options know shewhat might might like to have consider, caused including her skin more flare laser up and treatment whatshe and/or could topical do about sirolimus it. Kim – a Kerin-Ayres, cream that hadn’t TSA’s nurse beencontacted available when Mel and Mel discussed had last sought some of treatment the options for shemight her angiofibromas. like to consider, She including was amazed more at laser what treatment was nowand/or possible. topical sirolimus – a cream that hadn’t beenavailableKim providedwhenMelMelwithhadfurtherlast soughtinformationtreatmentandforherfollowedangiofibromas.up to answerSheherwasquestions.amazed atMelwhatsettledwas nowonpossible.a direction involving both laser and topical sirolimus,Kim and Kim provided reached Mel out with on further behalf information to connect and her withfollowed a skin specialist up to answer who provided her questions. her with Mel more settled detailed ona treatment direction information involving both and laser took and on her topical care. sirolimus,and This Kim was reached just the start out on of her Mel’s behalf relationship to connect with her TSA witha and skin Kim. specialist They have who now provided had more her with than more half a detailed dozentreatment information and took on her care.This was just the start of Mel’s relationship with TSAcalls and have exchanged several emails, discussingand Kim. They have now had more than half a dozenvarious other TSC-related issues, including Mel’s LAM.calls and have exchanged several emails, discussingvarious Having always other TSC-related worked in customer issues, including service and Mel’s phone- LAM.based roles, Mel feels confident on the phone and isHavinghappy shealwayscanworkedget her messagein customeracross.serviceSheandthinksphonebasedthismightroles,be oneMelof thefeelsreasonsconfidentsheonfindsthetelehealthphone andtoisbehappymuch theshesamecan getashera face-to-facemessage across.healthSheconsultation.thinks thismight She jokes be one that of it the also reasons saves her she having finds telehealth to travel to, to “yet bemuch another the health same appointment”.as a face-to-face health consultation.She jokes that it also saves her having to travel to, “yetanother Mel says health she has appointment”.found the TSA Nurse Service to beso good because Kim is, “so relatable and easy to talkMel to. I feel says I she could has talk found to nurse the TSA Kim Nurse about Service pretty much to beso anything. good because She has Kim answered is, “so so relatable many questions and easy for to talkto. me, I and feel with I could Kim talk being to nurse a nurse, Kim she about understands pretty much whatanything. I’m going through. She has answered Kim has been so many great questions at helping for meme, work and through with Kim the being options a nurse, available she to understands me always whatI’m follows going up through. to see where Kim has I’m been at. For great me, Kim at helping has been me awork wonderful through support. the options It’s really available nice to to have me and someone always likefollows her in my up corner.” to see where I’m at. For me, Kim has been awonderful support. It’s really nice to have someone likeTSA’s Nurse Service has been made possible thanksher in my corner.”to grant funding as part of the Patient PathwaysTSA’s Program, Nurse a federal Service government has been made initiative possible developed thanks byto the grant Centre funding for Community-Driven as part of the Patient Research. Pathways Many ofProgram, our TSC families a federal have government benefited initiative from this developed new service bythe over Centre the past for year Community-Driven and the program Research. hopes to Many gather ofour enough TSC evidence families have to secure benefited permanent from this funding new service forover this important the past year service. and the Having program a dedicated hopes to nurse gather toenough inform and evidence support to families secure permanent has made a funding big impact for onthis the help important available service. to our Having TSC community. a dedicated Mel’s nurse story isinform just one and example support of families the difference has made this a grant big impact is making onthe for people help available in Australia to our living TSC with community. TSC. Mel’s story isjust one example of the difference this grant is makingfor people in Australia living with TSC.9
Page 1 and 2: Annual ReportTogether we can create
Page 3 and 4: Tuberous Sclerosis Australia (TSA)T
Page 5 and 6: TSA's AchievementsThis Year 19/20Pr
Page 7: HudsonTogether, we are improving TS
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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