Winter Newsletter 2022

Unifying Support and Gene cs EDITION: WINTER 2022

Thalassaemia and Sickle Cell Australia Chair’s Address Welcome everyone to the Winter Edi on of our quarterly newsle er.

I would like to start by welcoming our new Office Administrator Ahmed Besirevic to TASCA. Ahmed will take on the day-to-day management of the office and be the first point of contact for all queries and concerns. We look forward to working with Ahmed and availing ourselves of his broad range of exper se and knowledge.

As you will read in this newsle er, we have been very busy working on a number of projects and engagement ac vi es aimed at raising awareness of haemoglobinopathies and increasing membership.

We have been ge ng out to different fund drives,

comple ng fire and first aid training, mee ng people and con nuing to liaise with treatment centres.

On a recent trip to Darwin, I took the opportunity to visit the main transfusion centre, at the Alan Walker Cancer Centre at Darwin Hospital and meet with some of the staff there. Simply reaching out to pa ents and le ng them know that someone is advoca ng for them is a truly gra fying part of my role.

As of June we have gained approval to be an Informa on Partner with Healthdirect Australia, an exci ng opportunity for us to make our resources available on a government-funded, na onallyaccessible digital pla orm.

Media We have also made an impact in the media with:

Ø

A story in KidSpot about Lucas and Liam, two brothers who are both transfusion dependant, and how their parents have navigated the requirements and treatments for their boys.

Ø

Greek community newspaper Neos Kosmos running a feature ar cle on our Family Fun Day and the work we do for and with our members.

Ø

A short informa onal video at the 2022 Vivid Film Fes val held in Sydney where we raised awareness of haemoglobinopathies and the opportunity to have a voice through TASCA. We thank TreeTrunk digital for their collabora on with us.

Ø

TASCA Commi ee member Dr John Malios spoke on Brisbane radio 4BC (882 kHz DAB Digital) as part of World Sickle Cell day.

CONTENTS Pg 1 Chair’s Address Pg 2 Staff Update / TASCA Upcoming Events - Introducing TASCA’s new office administrator Pg 3 Health & Research - Rosario’s Story

Thank you to the whole TASCA team for their ongoing work on various projects and also to you, our members, for suppor ng us, reaching out to us and encouraging our efforts on your behalf.

Pg 4

con nued - Rosario’s Story - Hellenic Medical Society of Australia

Pg 5 TASCA Events

If you would like to reach out to me personally please feel free to contact me on 0408341331 or email chair@tasca.org.au.

- TASCA Family Fun Day

Take care and stay warm!

- Light-ups for Interna onal Thalassaemia Day & World Sickle Cell Day

Pat Bollard TASCA Chair

- Easter Baskets for the hospitals

- Interna onal Nurses Day - U3A Bentleigh

W W W. TA S C A . O R G . A U

FOLLOW US thalaust LIKE US ON

Pg 6 TASCA Kids’ Page

Thalassaemia and Sickle Cell Australia Unifying Support and Gene cs

Staff Update

Thalassaemia and Sickle Cell Australia

his background in sales and media to make a posi ve

CONTACT US

impact within the organisa on and aid in raising the

PHONE: (03) 7015 5637 EMAIL: info@tasca.org.au ADDRESS: Room 44, Barry Neve Wing Moorleigh Community Village Bentleigh East, VIC, 3165, Australia POSTAL ADDRESS: P.O. Box 3076, Moorabbin East, VIC, 3189, Australia

much-needed awareness around these gene c

Introducing TASCA’s new Office Administrator : Ahmed Ahmed has come on board as the new Office Administrator for TASCA. He is passionate about helping people from all walks of life and aims to do this by using

condi ons. Finding out through a blood test earlier this year that his partner is a carrier of Thalassaemia, he started to learn a lot more about the condi on and wanted to make a difference. In his free me, Ahmed enjoys staying ac ve and ge ng out of the house while exploring the beau ful sites and landmarks Victoria has to offer. He also loves a good cup of coffee every day of the week and spending his Sundays in Pjs. Ahmed is looking forward to his new chapter here at TASCA.

TASCA acknowledges Australia’s first peoples as the tradi onal owners and custodians of the land on which we meet and provide our services to those effected by gene c haemoglobin disorders. We pay our respect to them and their cultures, and to elders both past and present.

CONGRATULATIONS! Stephanie McCormick & Hayden Byrnes A big congratula ons to Commi ee Member Steph and her husband on the arrival of their son Harley Mason! We at TASCA welcome him to the world and wish him a long, happy and healthy life.

Visit TASCA.org.au/store to check out the great range of TASCA branded items and show your support. 100% of the profits go right back to help us suppor ng, advoca ng and educa ng!

Thalassaemia and Sickle Cell Australia acknowledges the support of the Victorian Government.

The informa on in this Newsle er is provided by Thalassaemia and Sickle Cell Australia for educa onal and i n f o r m a o n p u r p o s e s o n l y. I t i s n o t a s u b s t u t e for professional medical care and medical advice. The contents express the opinions of the authors who alone are responsible for their views expressed.

Thalassaemia Sickle Cell Australia does not accept any legal responsibility for their contents.

2

Thalassaemia and Sickle Cell Australia W W W. TA S C A . O R G . A U

FOLLOW US thalaust LIKE US ON

Health & Research: TIF Update Rosario’s Story | A true champion of resilience He may be affected by β-thalassaemia major, but that hasn't stopped him from maintaining a posi ve outlook on life nor from le ng his resilience shine through the daily challenges of living with a complex and debilita ng health condi on.

37-year-old Rosario Maccarone from Calabria, Italy has indeed achieved something extraordinary. Last December, he became the protagonist of a real spor ng feat, running a half marathon in the incredible me of 1 hour, 37 minutes, and 53 seconds, which is, in fact, the fastest ever documented in an official compe on for a person with this pathology.

Rosario was more than eager to recount this wonderful experience to TIF for the Interna onal Thalassaemia Day 2022 and share some inspiring messages with his peers. “It is important to give credit for this result to the research, to the great efforts that have been made to improve the living condi ons of individuals with thalassaemia, especially in the last few decades,'' he says. In fact, un l a few years ago, all of this would have been unthinkable! Something that I hope will give confidence to all younger pa ents, who at this moment may be seeing only the difficul es.'’

Tell us a li le about yourself.

Who are you and what do you do?

I am 37 years old, I am Calabrian and I currently work for the Italian Postal Services, although I have

studied graphic arts. I love to travel, to seek out new experiences, and, for some years now, to run!

How was this passion for running born?

Sports have always been a part of my life. In recent years, however, due to my previous job as a graphic designer, I spent too much me on my computer and I needed to be outdoors more and get some sun, given the rather disquie ng test results of my latest MOC (aka Computed Bone Mineralometry, a simple, reliable and low radia on ex p o s u r e exa m w h i c h

analyzes the bone mineral density of the skeleton) because, as you know, one of the complica ons of thalassaemia is osteoporosis. Therefore, I thought that instead of exercising in the gym, it might be a good idea to do some jogging to strengthen my bones. Without any pretense or agonis c ambi on, of course.

A half marathon is not a jog though. Did everything go according to your plans?

It is true, but the great goals are nothing more than a sequence of small steps, and if these small steps are guided by the desire to feel good instead of overdoing it, the path is less hard than one might think. Indeed, as far as I am concerned, it was very exci ng!

Seeing, day a er day, week a er week, improvements that you never thought remotely possible, gives you a lot of confidence. When you face difficul es, which un l then seemed insurmountable, you kind of learn that tomorrow the impossible can actually become possible, and it's worth figh ng for, believing in it is equivalent to giving yourself a chance.

Your words convey a lot of passion! What do you feel when you run?

You see the asphalt rushing under your feet; the air caresses your face and opens up in front of you, making you enter as if into another dimension. Your senses are incredibly amplified How did running affect your health and vice versa? and this makes you feel even more alive. The rela onship between yourself, the A er a year and a half of train every other day and environment and me is totally transformed, emo ons are overwhelming! running, I repeated the not every day, and I have to Tell us a li le about the race, how did it go?

MOC. The values were limit par cularly intense A day that I will carry in my heart forever; to begin with, it was fantas c to be among so greatly improved. This was workouts. many people who have the courage to get involved, who bring their efforts, their dreams, a huge success! There were At the moment, with these and their stories to that star ng line. Each of them, unique. Before the start I felt a bit of also evident improvements precau ons, I am able to tension, it was the first me to ever par cipate in a compe on of that type, I didn't know if in the heart. keep the pre-transfusion I would really be able to be compe ve enough, and among other things, I didn't even feel it Nevertheless, there are haemoglobin levels around was one of my best days. When the star ng gun was fired, however, all my anxiety melted also some disadvantages. 9.5, transfusing myself, away. A er a few km, in fact, I was able to catch up with many of the athletes who had Running con nuously and however, a couple of days started before me. And then it was pure happiness … I had the volcano of Etna in the raising the pace, led to in advance. background covered with snow on one side and the sea on the other. An indescribable For me this is a good lowered haemoglobin emo on, and then, at the finish line, the nice surprise at a chronometric level. levels; it was not easy to balance, overall I feel much But a different me wouldn't have changed much, because in the end for me the real success was being able to finish the race. find a balance. In fact, I be er.

3

Thalassaemia and Sickle Cell Australia W W W. TA S C A . O R G . A U

FOLLOW US thalaust LIKE US ON

So do you think it is possible for people with thalassaemia to prac ce sports at a compe ve level?

No, I do not know this; I am not a doctor and I do not have the knowledge to be able to make assessments of this type. Surely every sport makes its own story, as does every pa ent… some sports seem to me, if not prohibi ve, at least strongly discouraged.

As for running specifically, I am not the first in the world to tackle similar distances in compe ve races, much greater distances have also been run, even if at a slower pace. Having a compe ve spirit does not mean arriving

before others, for me it equals dedica on, commitment, being among others, discussing, and having beau ful experiences that enrich us. I think of friends who have wonderful families (and among other things, I bet running a er three children every day is much more challenging than running the hardest of marathons …) or successful careers. Many people fight like lions doing excep onal things, despite their disease. Unfortunately, sports s ll remain a bit of a taboo for many.

The secret of your result?

Doing things very gradually, without being obsessed with the result. But, above all, taking care of yourself. Trust the healthcare professionals who follow you and have the best possible compliance with therapies. I have to thank my parents who helped me a lot in this, they made me understand right away that my life depended on it. They did a great job, like

many other parents of people with this condi on. I also brought them to the race, along with other people I love, like my girlfriend who gives me courage every day. I also brought with me the faces of all the pa ents I met throughout all these years in the thalassaemia wards. Because I think that the success of one must be the success of all.

Hellenic Medical Society of Australia The Hellenic Medical Society of Australia (HMSA) is a medical organisa on, which aims to unite medical professionals with the community to achieve be er health and inspire lifelong advancement in knowledge.

Through our events and ac vi es, we share knowledge and experience, promote best prac ce, and promote health care within the community.

We run a number of events annually both for our member doctors and community-based events that are open to the public. HMSA consists of a board of 16 medical prac oners of various special es. Medical prac oners may join by visi ng www.hmsa.org.au The general community can also follow HMSA on the social media links below. Here we regularly upload informa ve medical news, upcoming events, and other ac vi es that HMSA supports.

We have Doctors’ Directory that can be accesses on the website. This is a useful tool for both the community and health professionals.

To learn more about or join HMSA visit www.hmsa.org.au Follow us on Facebook h ps://www.facebook.com/hellenicmsa Follow us on Linkedin h ps://www.linkedin.com/in/ hellenic-medical-society-of-australiahmsa-416232193/ Email: info@hmsa.org.au

From li le boy who read his big brother’s medical books to GP trailblazer In the second of an occasional series on interes ng Greek-Australians, Dora Houpis* speaks to her former GP of nearly 50 years, Dr John Malios, about growing up Greek in the 1950s and 1960s, trea ng early Greek migrants and helping to set up the associa on of Thalassaemia and Sickle Cell Australia (TASCA).

The fig tree Evdoxia Malios planted in her son’s new GP clinic 50 years ago is s ll there.

But, the sunroom where she met other elderly Greek women is long gone. It was knocked down to make way for parking. Re red GP Dr John Malios needed all the parking he could get as he ran his busy Oakleigh prac ce from an impressive brick Edwardian house, at 139 Warrigal Rd, for nearly half a century. “Ninetynine per cent of my pa ents were Greek,” he said. It was the 1970s and other young doctors, whose Greek parents and grandparents had migrated to Australia

4

decades before, where also se ng up clinics to treat the diaspora.

Also in Oakleigh, in Melbourne’s south-east, were Dr Jim Drakopoulos and later Dr Stanley Savvas who had come from Western Australia.

Dr Athanasios Gouras was in the the innerMelbourne suburb of Prahran. Before these doctors was the well-known Dr Spiros Morai s, who started his St Kilda prac ce, in 1958 and even Dr Malios’s late elder brother, Thomas. But before all these doctors, Dr Malios remembered the first Greek physician in Melbourne being the overseas-trained, Dr Paroulakis, who had a Collins St clinic, in the city.

The late Dr Thomas Malios graduated from Melbourne University in 1956 and soon opened his own GP prac ce in Carlton.

Thomas Malios was one of the few Greekspeaking, locally-trained GPs in Melbourne.

Thalassaemia and Sickle Cell Australia W W W. TA S C A . O R G . A U

Teamwork: Helen Lolatgis(le ), Dr John Malios and nurse Prue Mellor, outside Dr Malios's former clinic, at 139 Warrigal Rd. Photo: Kostas Deves

To con nue reading this ar cle visit h ps://neoskosmos.com/en/2022/06/20/features/ from-li le-boy-who-read-his-big-brothers-medicalbooks-to-gp-trailblazer/

FOLLOW US thalaust LIKE US ON

TASCA Events, April to June Bunnings Easter Brunch As part of their community programs, Bunnings invited TASCA to a end an informa on session at Bunnings Moorabbin on Saturday April 2nd. Our Chair Pat Bollard and Pa ent Voice Peter Vervenio s a ended the event, giving out informa on brochures and mee ng members of the wider community.

Easter Baskets for the hospitals To celebrate Easter, TASCA provided both Monash MIU and Royal Melbourne Hospital 5 West Day Medical with Easter baskets as prizes for a free raffle. Congratula ons to Diva at Monash and Michael at Royal Melbourne Hospital, who were the lucky winners of a basket full of Easter goodies!

TASCA Family Fun Day On Saturday May 7th, some very dedicated people a ended a picnic at Caulfield Park to celebrate Interna onal Thalassaemia Day. Despite the cold, we enjoyed hot coffee, sandwiches, chocolates and ice cream.

The event was held to con nue the efforts of TASCA to raise awareness of gene c blood condi ons, which affect many people worldwide. This was the first social post-COVID event and it was great to talk with pa ents, commi ee members and invited guests face-to-face, as well as to answer ques ons about thalassaemia from others at the venue.

TASCA would sincerely like to thank all who a ended, including Ms Debbie Taylor-Haynes (Liberal for Bentleigh). We would also like to thank Glen Eira Council who supported this event through their Community Engagement Program and the various suppliers of coffee, ice cream and face pain ng.

We look forward to seeing many more members and their families at future engagements.

Light-ups for Interna onal Thalassaemia Day & World Sickle Cell Day May 8th and June 19th were Interna onal Thalassaemia Day a n d Wo r l d S i c k l e C e l l D a y, respec vely. In recogni on of these awareness days, we organised for d i ffe r e n t l a n d m a r k s a r o u n d Australia to light up blue for Thalassaemia and red for Sickle Cell. Here are some of the sites that shone bright in support of haemoglobinopathy pa ents, their families and those who care for them.

Interna onal Nurses Day Thursday May 12 was Interna onal Nurses Day. To thank the wonderful nurses that treat and care for haemoglobinopathy pa ents, TASCA sent along some cupcakes to Monash Health and the Royal Melbourne Hospital.

Many thanks to Litza at Litza & Co Cupcakes for the delicious treats!

U3A Bentleigh On Saturday June 25 TASCA representa ves a ended the launch of the newly named U3A Bentleigh at Moorleigh Community Village.

U3A serves the needs and interests of residents in the local area and provides a diverse and informa ve range of courses and ac vi es for senior ci zens. The organisa on is a steadfast supporter of TASCA and we thank them for their kind invita on.

5

Thalassaemia and Sickle Cell Australia W W W. TA S C A . O R G . A U

FOLLOW US thalaust LIKE US ON

TASCA KIDS’ PAGE

6

Thalassaemia and Sickle Cell Australia W W W. TA S C A . O R G . A U

FOLLOW US thalaust LIKE US ON