TASCA Newsletter Summer 2022

ThingshavecertainlybeenbusyatTASCAsinceourlastnewsleer

In November, I aended the Rare Voices (RV) Summit in Sydney, where a variety of RV ambassadors shared their stories of living with a rare or undiagnosed condion during the two-day conference It was exceedingly humbling for me to be in the audience and listen to their stories and struggles for medical support, but also to celebrate the way in which the human spirit can rise to challenges. There are currently about two million Australians living with rare diseases, of which 7,000 arerecognisedandmanyaresllundiagnosed.

Rare Voices launched their Acon Plan two years ago and it centres around the pillars of awareness, educaon, equity and access, research and support. At TASCA, we work on many of these same priories, parcularly in the areas of awareness, educaon and support. I am very proud of the work we undertake to support our community in many of these areas, and will connue to work towards greater outcomes for ourmembersintheyearahead.

I want to take this opportunity to congratulate our Health Promoon Officer Marina, who has just completed her accreditaon as a Mental Health First Aider Undertaking this training with enthusiasm, Marina recognises that there is a great need for us to be able to offer mental health support to our community I also completed the accreditaon trainingearlierthisyear Ifanyoneisinneedofachat,pleasefeelfreeto reachouttoeithermyselforMarina.

Our AGM at the end of October saw an aendance (virtually) of about 15 commiee representaves and members We delivered our financial and annual reports and also welcomed the opportunity to hear from our guest speaker, Dr Pasquale (Paddy) Barbaro. Paddy is the lead haematologist at Brisbane Children's Hospital and he spoke to those in aendance about the service provided to children and their families, as well as the challenges that they face around social worker and mental health support. We will connue to liaise with Paddy and other medical staff as we work towards greater advocacy in 2023. As Christmas approaches, I would like to personally take the opportunity to thank every member of our community who has reached out to me and supported the work that we do. As volunteers, we give our me willingly and happily, and feel grafied when we receivefeedbackfromourmembers.

Next year promises to be beer and busier for all of us, so please take the opportunity to celebrate the holidays with your loved ones, rest, enjoy all the fesve season brings, but also take me out to look aer yourselves.

Pat Bollard TASCA Chair

Thalassaemia and Sickle Cell Australia

CONTACT US 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 TASCA acknowledges Australia’s first peoples as the tradional owners and custodians of the land on which we meet and provide our services to those effected by genec haemoglobindisorders.Wepayourrespecttothemandtheir cultures,andtoeldersbothpastandpresent.

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

Here at TASCA, we are driven by a single goal – to do our part in making the world a beer place for those living with genecblooddisorders.

And so when the idea of membershipsarose, it was with gleethat it was unanimously FREE passedearlierthisyear

TASCA believes that care should extend beyond the treatment centre. We support those affected by haemoglobin disorders through peer support and social events. We also empower paents and families through educaon and informaon Pleasecallusorsendusamessageifyouwouldliketobecomeamember.

SCAN ME

WENEEDYOURHELP!

TASCA puts great effort towards raising public awareness of genec haemoglobin disorders, including thalassaemia and sickle cell disease. But your voices are what makes thebiggestdifference.

We are currently developing two more short videos to help back our messages as we're engaging with policians, schools, clinicians, and community groups. We know how busy you are, and these opportunies are a powerful opportunity to be involved without taking alotofyourme.

We are looking for paent voices (and faces) who are willing to either tell their story or be a part of an educaonal video. Please email us at info@tasca.org.au to express your interest,formoreinformaon,orifyouhaveanyquesons.

Thalassaemia and Sickle Cell Australia acknowledges the s u p p o r t o f t h e V i c to r i a n Government.

We are planning our 2023 calendar of events and we're looking for volunteers to help us with: fundraising (e.g. bbqs, raffle selling); raising awareness at public events; wring newsleer arcles; admin support; advocacy and lobbying; governance; becoming a part ofthecommiee…

We welcome volunteers from all walks of life. You just need a passion for improving the community and helping others! Fill in an online form and w love to connect in whatever shape works for you: tasca.org.au/become-a-volunteer/

r e s s e d Thalassaemia Sickle Cell Australia does not accept any legal responsibilityfortheircontents.

andSickleCellAustralia

HEALTH & RESEARCH

Join the TIF e-academy

Thalassaemia Internaonal Federaon has created an online learning experience, TIF e-Academy This online tool aims at increasing the knowledge of paents, parents and healthcare professionals on thalassaemia and sickle cell condions, including past and current advances. This is a credible source, which has been wrien and reviewed by medical professionals andexpertpaents.

The TIF e-Academy is free of charge and has a variety of courses inmanydifferentlanguagesavailableonlinenow!

hps://thalassaemia.org.cy/what-we-do/educaon/e-academy/

Your Long COVID Support Online Community

Managing the impacts of Long COVID can feel isolang. With new evidence emerging allthemeandregularrepornginthemediaofthewidespreadandseriousnatureof thecondion,itcanbehardtoknowwheretoturn.

To meet this growing need, an online support community for anyone affected by Long COVIDhasbeenlaunchedrecently Ifyou,orsomeoneyouknoworcarefor,isaffected by Long COVID, please find further informaon below on how you can access free onlinesupport.

www.longcovidsupport.org.au

According to the World Health Organisaon (WHO), Long COVID is largely characterised by symptoms which may include shortness of breath, cognive dysfuncon and fague. However, the WHO acknowledges that more than 200 symptoms have been reported as indicave of Long COVID which extend toincludingchestpain,troublewithspeech,ongoingcough,breathlessness,fague,anxietyanddepression.

A person is usually considered to have Long COVID if their symptoms have persisted for longer than 12 weeks aer their inial COVID-19 infecon. Essenally, if it has been a few months aer your infecon with COVID-19, and you're sll experiencing symptoms, you may in fact be experiencing Long COVID

You're not alone. In the wake of the COVID-19 pandemic, it has become increasingly evident that the condion Long COVID is emerging as a serious publichealthconcernthatrequiresaenonbothwithinAustraliaandglobally

Health Issues Centre has recently launched Long COVID Support – an Australian first, standalone, online community aimed at providing support and conneconforindividualsaffectedbyLongCOVID

Developing this community has been made possible with funding from the Victorian Government's Department of Health and the Lord Mayor's CharitableFoundaon.

The driving force that led to the development of the Long COVID Support community was the belief that the first step towards towards Long COVID recoveryistobelongtoasupporvecommunitythatcanempathiseandshareknowledgeandresourcesbasedonlivedexperience.

'Long COVID Support' is an online plaorm where people who are affected by Long COVID can connect, gain support and access informave and evidence-based resources. This online community has been created as a safe and respecul space. To ensure the emoonal safety and privacy of our members, the forumisregularlymoderatedbyourexperiencedteammembers.

Theplaormalsoincludesup-to-date,informaveandevidence-basedresearchandnewsarcles,aswell asalistofever-evolvingresourcesthatindividualscanaccesstoaidintheirLongCOVIDrecovery

connecng

partners.

Despite the cold weather, we were able to meet with TASCA members who shared with us their stories, concerns and thoughts around ways in which we can further support them. As in Victoria, there is a concern about limited access to mental health services, social worker support and informaon for those in CALD (Culturally and Linguiscally Diverse) communies.

In meeng with clinicians and nursing staff from several hospitals these senments were echoed, in parcular, the need for greater social support for families TASCA offers a number of informave documents on thalassaemia and sickle cell condions in different languages, but we are alwayslookingtoaddanyotherswhichwillhelppaents.Asaresultofthe contacts we have established, we will work on expanding our library of resources.

As a follow-up to our October visit and connecng with paents and clinicians, we were able to meet with Queensland State and Opposion Health Ministers to push the need for more support for haemoglobinopathypaentsandtheirfamilies,aswellasfornursesinthe treatmentcentres.

Peter and I also met with representaves from Lifeblood Australia (a vital partner for TASCA) and were able to establish a few priories for 2023, including working with them on our PR video and our school educaon program,inconjunconwithLifebloodVictoria.

Before returning home, we met with Support Groups Queensland whose mainroleistoconnectpeoplewithhealthissueswithsupportservices, help people to start support groups and also work with exisng support groups to broaden their scope. Having no knowledge of haemoglobinopathies, we were able to explain the condion, the role of TASCA in the community and the emerging prevalence within migrant communies of both thalassaemia and sickle cell condions. We were also able to connect with a number of schools with high concentraons of CALD students, with a view to being able to deliver our educaon programs virtually in the newyear Overall, it was a very producve venture and I would like to thank Peter for sharing his personallivedexperiences,hisinsightsandsupport.

TASCA's Chair and Paent Voice (Pat and Peter) visited Brisbane for the purpose of

with members, clinicians and other advocacy

Christmas Card Competition WINNERS!

Thank you to everyone who has entered our Christmas card compeon. Along with the kudos of having your design selected as the official 2022 TASCA Christmas card, up for grabs were some fun gis, such as movie ckets and items from the official TASCA shop.

There were some fantasc designs, and we loved them all. In fact, we were so impressedthatitmadeforadifficultdecision.

Farewell and Good Luck!

The TASCA community would like to take this opportunity to say farewell to Carolyn from MIU andwishherallthesuccessinherfutureendeavours.

As most would be aware, Carolyn has been Nurse Manager at Monash Clayton for almost nine she has been an invaluable support to paents, their families and carers. She has been able milestonessuchasweddings,babiesandgraduaons.

Carolyn has also seen the transion of the infusion centre from MTU to MIU, and all the em associated with change. Further, she handled the day-to-day operaons of MIU under the sever andchallengesbroughtonbyCOVID-19

Taking up a new role brings its own challenges so we, at TASCA, thank Carolyn for her ongoing support of our members,hercareandempathy,aswellasherhumour

Carolyn's last day at MIU was Friday November 25th and Jenny will be Nurse Manager unl a replacement has beenappointed

TASCA also wishes its Office Administrator, Ahmed, all the best in his future endeavours. Aer finding out through a blood test earlier this year that his partner is a carrier of Thalassaemia, he has learnt a lot more about the condion and we look forward to seeing them both at future TASCA events.

A hearty congratulaons to our winners: Henry Sherar, Gaziel Rouma, Emily Pham, and Ellia from MonashVale.

Reindeer Pancake Recipe

Ingredients

2 cups all purpose, plain flour

1/4 cup granulated sugar or sweetener

4 teaspoons baking powder

1/4 teaspoon baking soda

1/2 teaspoon salt

1 3/4 cups milk (440ml)

1/4 cup buer

2 teaspoons pure vanilla extract

1 large egg

Method

Reshape your December breakfasts by trying out this fun reindeer pancake recipe.

It's so so and so fluffy… each mouthful melts in your mouth…

1. Combine together the flour, sugar (or sweetener), baking powder, baking soda and salt in a large-sized bowl. Make a well in the centre and add the milk, slightly cooled melted buer, vanilla and egg.

2. Use a wire whisk to whisk the wet ingredients together first before slowly folding them into the dry ingredients. Mix together unl smooth (there may be a couple of lumps but that's okay). (The baer will be thick and creamy in consistency. If you find the baer too thick -- doesn't pour off the ladle or out of the measuring cup smoothly -- fold a couple tablespoons of extra milk into the baer at a me unl reaching desired consistency).

3. Set the baer aside and allow to rest while heang up your pan or griddle.

4. Heat a nonsck pan or griddle over low-medium heat and wipe over with a lile buer to lightly grease pan. Pour ¼ cup of baer onto the pan and spread out gently into a reindeer face.

5. When the underside is golden and bubbles begin to appear on the surface, flip with a spa unl golden. Repeat with remaining baer

6. Plang: add blueberries, banana, and strawberries to create the face and dus with powdered sugar for the ‘snowy' winter effect.

Who wouldn't want to eat a Rudolph pancake for breakfast?

We’d like to say thank you for your connued support and from Team TASCA