Spring Newsletter 2022

Thalassaemiaand SickleCellAustralia

Unifying Support and Genecs

We have become an Informaon Partner with Healthdirect (formerly Nurse on Call). This is a naonal iniave, funded by the Federal Government, and serves as a valuable resource for all Australians. Our secon contains informaon on both Thalassaemia and Sickle Cell Anaemia,genectesng,treatmentcentresandaddionalresources.

You can read this informaon by accessing Healthdirect on hps://www.healthdirect.com.auandsearchingThalassaemia.

We have met with representaves from Lifeblood Australia to collaborate on more pop-up blood donaon centres and community programs. Please keep an eye our social media posts and donate blood for the large number of people in our community who depend on your contribuons.

Our Health Promoon Officer, Marina, has aended a number of forums organised by the GSNV (Genecs Society of Victoria) and connued work on the Mental Health Working Group. We are also aending a number of virtual conferences on an-virals, which we will presenttoourmembersinthenextnewsleer.

Our team is also working collaboravely with RVA (Rare Voices Australia), another key partner in our ongoing advocacy and paent support work. Our current project focuses on working with CALD (Culturally and Linguiscally Diverse) communies and their specific needs in terms of accessing and understanding health care and treatments In addion, TASCA will be represented at the 10th AdvocacyForuminNovember

In October Peter and I will be vising Brisbane to meet with staff and paents at a number of treatment centres, including the Children’s Hospital. This the first step in establishing a closer connecon with our members, their families, clinical nurses and doctors in Queensland and helpingtoraiseawarenessofhaemoglobinopathies.Inaddion,weare arranging to meet with State Ministers to discuss the specific needs of haemoglob-inopathypaents.

It was with great sadness and respect that we aended the funeral service for Lou Alborea, at his family’s invitaon. For those who knew Lou, the tribute from his family will resonate. I would personally like to thank his sister Maria and niece Olivia who came to the office to meet with us, talk about and remember Lou, as well as for their generous donaon to TASCA. It was clear to see that Lou was much loved and a greatexampleofposivityandperseverance.Mayherestinpeace.

As menoned in this newsleer please keep an eye out for the info on ourforthcomingAGMonOct24th,2022.

Finally a warm welcome to Marina, who came into the office at a busy me of the year and ‘hit the ground running’ with school presentaons inherfirstweek!

Pat Bollard TASCA Chair

and Sickle Cell

STAFF UPDATE

Introducing TASCA’s new HEALTH PROMOTION OFFICER :

Marina Yarotska

We would like to welcome Marina Marina has a demonstrated history administrator and an Accredited Pracsing Diean (APD). She has a passion for promong health and engaging various sectors of the community to raise awareness as well as educang individuals of all levels of health literacy. Addionally, Marina is bilingual and is able to understand the cultural diversity of a community In her spare me, Marina is quite physically acve and enjoys going for beach walks and to reformer pilates. Marina is also a creave and enjoys photography and digital design forherselfandcollaborangwithsmallbusinesses.

MarinaisreallylookingforwardtojoiningtheteamatTASCA.

UPCOMING TASCA EVENTS

TASCA AGM

24TH OCTOBER 2022

TASCA

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be on the

to its Annual General Meeng

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TIF UPDATE

Thalassaemia Champions: The Mental Health Sessions

This three-part audio and video podcast series is brought to you by the Thalassaemia Internaonal Federaon (TIF) and discusses mental health topics related to paents, caregivers and the broader community of individuals affected by thalassaemia major, also known as transfusion dependent thalassaemia(TDT).

Striving to demysfy all stereotypes and taboos associated with mental health, the episodes feature stories from paents with lived experiences who overcamementalhurdlesandeasy-to-digest,expertadvice.

'Thalassaemia Champions: The Mental Health series' is available for you to listen to on Spofy, Google Podcasts, Amazon Music, Stcher, Podcast Index, and many other directories. It will also be available on Apple Podcasts shortly ThevideoversionofthePodcastisfeaturedonTIF'sYouTubechannel.

one: ‘Dealing with psychological distress’

Hosts George Constannou, TIF Board Member, and Expert Thalassaemia Paent, and Maria Hadjidemetriou, Cooley's Anemia Foundaon (CAF) Board Member and Member of TIF's Paent Advocate Group (TPAG) delve deeper into the psychological distress paents with thalassaemia of all ages oen experience. Guest speakers offer unique insights and praccal advice to help listeners escapenegavethoughtcyclesandreducetheiranxiety.

two: ‘Dealing with worries about current

and future life situations’

is all about helping paents cope

with feelings of worry and anxiety about future and current life situaons that can oenmes be quite overwhelming. Discussing what paents themselves have brought up through their own quesons, our hosts aim to offer simple guidance and encouragement to help listeners break through negave thoughts andempowerthemtolivetheirbestlife

three: ‘Learning resources for coping with

illness: how to put yourself in control’

World Patient Safety Day 2022

TIF remains commied to keep advocang towards sustainable change in order for both healthcare and medicaon to become safer for its paent communies around the world. This year, TIF supported the World Paent Safety Day 2022, which focused on increasing worldwide public awareness and collaborave country acononpaentsafety

The main objecves of this event were to:

1. Raise global awareness of the high burden of medicaon-related harm due to medicaon errors and unsafe pracces, and advocate urgent acon to improve medicaon safety.

2. Engage key stakeholders and partners in the efforts to prevent medicaon errors and reduce medicaon-related harm.

3. Empower paents and families to be acvely involved in the safe use of medicaon.

4. Scale up implementaon of the WHO Global Paent Safety Challenge: Medicaon Without Harm

Supporting TASCA's Annual Conference

Every individualhas faced the rocky emoonal terrain that a chronic illness, such as thalassaemia major, inevitably brings. In the third and final segment, audience's quesons are used to help shed light onto useful strategies that could help listeners put themselves in controloverdisease-relatedissuesandsituaons.

The Internaonal Society of Blood Transfusion recently held a series of webinars on 'Haemovigilance in Australia and Beyond” These webinars are part of a series of forums where sciensts, haematologists, transfusion nurses, regulatory authories and consumers come together online to discuss safety and quality through data, the care and wellbeing of donors, and improving consumerengagement. ThroughourconneconwiththeNaonalBloodAuthorityAustralia we were invited to present from the point of view of consumers. Our Vice Chair Robbin prepared an informave presentaon from the point of view of a consumer for both Thalassaemia and Sickle CellAnaemia.

Follow the QR code or head to the Internaonal Society of Blood Transfusions website to watch the presentaon: hps://www.isbtweb.org/resource/haemovigilance-in-australia-

Last month, Thalassaemia and Sickle Cell Australia aended the 2nd Annual ASCA Sickle Cell Conference and provided somefinancialsponsorship/contribuontosupportASCAinrunningthishybridevent.

Aended by medical professionals, researchers and paents from Australia and overseas, the various presentaons wereengagingandenlightening.

Our Chair, Pat, had the opportunity to promote TASCA's advocacy purpose, goals and acvies undertaken on behalf ourthalassaemiaandsicklecellpaentsduringtheAdvocacyinAustraliapaneldiscussion.Shealsodiscussedtheneed for raising awareness in schools and the community in order to educate children from a young age. Along with George, ThalNSWPresident,theyhaveundertakentodomorecollaboraveworkonyouthengagement. Thank you to ASCA for inving us to support the event and a big congratulaons to Agnes and her team on the successful conference!

Profiling a consumer's voice at the

School Visits

Over the last few months our Health Promoon Officer Marina has aended various schools around Melbourne to provide free educaonal genecs presentaons to Year 10 and 11 Science and Biology students. The main goal of these presentaons is to educate and promote awareness of genec blood condions in the school community. Some of the schools visited include: Mt Hira College, Whilesea Secondary College, Catholic Regional College Melton, Loreto Mandeville Hall, Koonung Secondary College and St Columba's College.

QLD Visit

SUNDAY OCTOBER 9TH

The students were very engaged and enthusiascally shared that they had not previously heard of the condions before, however, aer parcipang in TASCA's presentaon they are more aware and are willingtodiscussandeducatetheirfriendsandfamily

One of the highlights was that aer one of the presentaons a few of the students told us that they were going to get tested for the condions, which was great feedback and one of the main objecves of theTASCAschoolpresentaons:raisingawareness.

We are looking forward to presenng at more schools in the near future,aswellasreachingouttoothergroupsinthecommunity

Meet with paents, carers and families

MONDAY OCTOBER 10TH

Meet with staff from treatment centres

TUESDAY OCTOBER 11TH

Meet with staff from treatment centres & the community

Calling all future designers: TASCA NEEDS YOU!!

Be in the draw to design the official 2022 TASCA CHRISTMAS CARD, and to win prizes - including movie ckets for two.

Head to TASCA website hps://tasca.org.au/tasca-christmas-card-design-compeon to download the template, and submit your design before 16th November 2022 to be in to win.

This compeon is open to all children and youth in Australia - whether you are 2 or 17 years of age, we’re keen to see your creave muscles flex and to see what Christmas means to you.

TASCA4Kids TASCA Memberships are FREE!

We are bringing back TASCA4kids! Our team will be hosng fun virtual and in-person acvies for all kids. TASCA had run this program during the long lockdowns and, due to member demand,wearebringingthisback-newandimproved!

In order to organise these sessions, we would love to hear from youandwhatyouwouldbeinterestedtobeinvolvedin.

Please send an email to info@tasca.org.au with your interests and acvity preferences.

Looking forward to engaging with you all.

The Thalassaemia and Sickle Cell Australia Commiee meets once a month to discuss important issues around advocacy, awareness and educaon.

Here at TASCA, we are driven by a single goal – to do our part in making theworldabeerplaceforthoselivingwithgenecblooddisorders. And so when the idea of memberships arose, it was with glee that itFREE wasunanimouslypassedearlierthisyear TASCAbelievesthatcareshould extendbeyond thetreatmentcentre.We support those affected by haemoglobin disorders through peer support and social events. We also empower paents and families through educaonandinformaon.

Pleasecallus or send us a message if you would like to become a member

#thalassaemia#sicklecell#australia#advocacy#membership

In Memory of Luigi (Lou) Alborea

On the 26 April 1957, Ruggiero and Antonina became the very proud parents of their firstborn son, Luigi, named aer our paternal grandfather Lou was born at Keiora Private Hospital, Melbourne

The first four years of Lou's life were typically normal, a thriving and healthy beauful baby unl when aer a connuous period of being unwell and suffering from anaemia, was diagnosed with an illness called Thalassaemia Major This is a condion that was not very well known amongst the medical professionduringthatme.Thenewsformyparentswasdevastang.

So began the journey of countless enquires by my mother to find out more informaon about the illness.

She aended many specialist appointments accompanied by her niece Maria who served as her interpreter at the me. The prognosis was very grim when my parents were informed of the severity of thisillnessandespeciallyoftheirson'sshortlifeexpectancyofnotevenreachingtheageof14.

This structured the course of Lou's life, requiring him to commute regularly with my mother from home to the Children's Hospital for blood transfusion. At the me this meant a three-day stay for Lou, which broke my mum's heart to leave her crying child. When Lou turned 18 years of age, he transioned to the Queen Victoria Hospital and, aer its closure, moved to the newly built Monash Hospital, Clayton which also specialised in this treatment. With theadvancementofmedicineandtechnologyhistreatmentwaseventuallyshortenedtooneday His school years were heavily impacted by his illness, having to take constant days off for treatment. This caused Lou to fall behind at secondary school. Unfortunately, welfare support or teacher aide did not exist in those days and, sadly, students with disabilies were le behind and struggled. However, LouconnuedtostriveandfinallycompletedhisLeavingCerficate.Thisisatestamenttohisperseveranceandhisatudethathiscondion wouldnot definehislife.

Lou's working life also became another challenge, having to take constant days off for treatment making it also extremely difficult to find employment. However, this did not deter Lou and he connued to persevere in seeking employment. He managed to find a few part mes jobs, commencing at the newly opened Red Rooster in Preston as a kitchen hand, then worked in the mailroom at Telecom Australia and, for a short while, with the Tramways. He eventually found permanent employment with the City of Port Phillip, where he spent 28 years before his rerement in 2017, again due to poor health. I was in awe of the stamina and strength he portrayed especially geng up at 4.44 am every morning to commence work in South Melbourne by 6.00 am and, in between, juggling his ongoing treatment. He was a loyal and commied worker, he enjoyed his job and the company of his workmates stayingincontactwithafew,inparcularJohn,PaulandNickiunlrecently Lou loved all his sports. He loved car racing, in parcular Formula 1, aending all the events even in Adelaide,unl Melbourne finally won the bid to host the event. He had a love of football and his favourite team was Collingwood. He aended almost every match with our cousins Michael and Guy, friend Kelvinandalsotookhisnephewsastheygrewolder

Aer the sad passing of our father in 1985 Lou took over the role of the man of the house. He also had the great honour of walking my sister and I down the aisle even though secretly we knew he was rapt to give us away and finally have most of the house to himself No more nagging, or the sound of the hairdryerorvacuumcleanerrunning.Therewaspeaceatlast.HewelcomedourhusbandsJohnandTonyintothefamilyliketheywerehisownbrothers. However, that peace was short lived with the arrival of our first nephew John, nine months later followed by Simon, Daniel and niece Olivia. My mother wasourbabysierandsothehousebecameverybusyandnoisyalloveragain.

He looked out for them like they were his own and as they became older, they looked out for him. They loved their Uncle Lou. He also became a great UncletoLucas,XavierandDante.

Lou mostly portrayed a quiet and reserved persona; he was always generous and giving to those in need. His heart spoke louder than words. However, his srring banter and cheeky grin never failed to shine through. I fondly remember for every special occasion like Christmas and birthdays, Lou would meculouslywrapourgiswithmanylayersofnewspaperjusttoenjoywatchinguspainstakinglyunwrapthem.

Over the last two years Lou's health started to further decline, especially towards the end of last year from his bale with heart failure. His strong will, determinaon and faith, steered Lou throughout his life and connued right up unl his last days. He never wanted to give up. He is living proof that one can defeat the odds and that was shown by his strength, resilience and his belief that one should never give up when faced with adversity

Dear brother, with all your challenges and struggles we thank you for playing your part in our mother's care Lou you were and will always be our inspiraon. We love you and you will be deeply missed. In our hearts you will always live. You are nowfree from pain and suffering so run through the Collingwood banner with your name on it, reach the heavenly gates with your head held high and receive your much deservedrewards,knowingthatyoufoughtthegreatestfight.

RestnowinthelovingarmsofdadinEternalpeace.

TheAlboreafamilywouldliketoextendourdeepestgratudetoallthemedicalstaffwhohaveoverseenLou'scareoverthemanyyears.

TASCA KIDS’

Spring Science Experiment: Rain, Rain, Don’t go away Recycled Rain Gauge

Materials Instrucons

2-litre soft drink bottle

Scissors Duct tape Sand Sharpie / Vivid Marker Ruler

1. 2. 3. 4. 5. 6. 7. 8.

Empty and wash out the 2- litre bole so it is nice and clean.

Take the scissors and cut off the spout top right where the taper or curve begins.

Fill the boom of the bole with 1/2 inch of sand. This will keep the bole from falling over on those windy days.

Pour in just enough water so you can see the water level above the sand. Yes, your sand will be wet! This is called your saturaon point.

Use the marker to draw a line at the saturaon point above the sand. Next to the line write “starng point”.

Line the ruler up (from the starng / saturaon point) and draw a line for every inch up to the top of the bole.

Take the top “cut off” spout poron of the bole and flip it upside down. Insert it into the bole and use some duct tape to secure it. This part will help catch and collect the rainfall by funnelling into your bole.

Now it is me to find a good place for your rain gauge outside and record your rain data.