CONTENTS
Connect with TASCA: Latest News and Updates
Phone: (03) 7015 5637
Email: Info@tasca.org.au
Address: Room 44, Barry Neve Wing Moorleigh Community Village Bentleigh East, Vic 3165 Australia
TASCA acknowledges Australia's first people as the traditional custodians of the land on which we meet and provide our services to those affected by genetic haemoglobin disorders We pay our respects to them and their cultures, and to Elders both past and present.
Stay connected, stay informed, and look forward to our monthly newsletters!
TASCA MONTHLY
PatBollard Chairperson, ThalassaemiaandSickle CellAustralia
Since our last newsletter TASCA has continued its community and public relations reach with many school visits and media exposure. In addition, we are working on programs to bring firsthand, impactful understanding to hospital staff as a way of further emphasising the holistic needs and experiences of people with genetic haemoglobin conditions.
In this issue, we are also pleased to include the Thalassemia International Federation Annual Report 2024. It makes for interesting reading as our international partner highlights the work carried out by TIF in connecting regional networks, bringing innovations to the fore and ensuring access and equity for all. I also highly recommend the TIFLiX digital library on their website.
From our Chair
SCHOOL PRESENTATIONS
August has been a busy month for school presentations as VCE students have been learning about Genetics in their biology curriculum. Our health promotions officer, Sally provided presentations at the following schools across the month:
King David School
Shelford Girls’ Grammar
Westall Secondary College
Northside Christian College
Alphington Grammar School
Macleod College
Cranbourne West Secondary College
St Johns College Preston
Belmont High School
Her presentation focuses on educating students about the genetics of haemoglobin
TASCA's AGM will take place on October 22nd, with information going out to all members over the next few weeks. I hope to see as many of you as possible there.
Stay safe, happy reading & thank you to all for your ongoing support.
TASCA MONTHLY
TIF ANNUAL REPORT
The Thalassaemia International Federation has released it’s Annual Report for 2023, marking a transformative year with the onset of new initiatives reflecting evolving priorities. As taken from the TIF website;
“In 2023, TIF enhanced its advocacy efforts with the WHO to advance the UN Sustainable Development Goals 2030 and universal health coverage, ensuring haemoglobinopathies remained a health agenda priority. Regional and international networks, such as TIF’s Regional Networks (Arab, Nordic, ASEAN, Americas) and Rare Anaemias International Network (RAIN) facilitated education, empowerment, and policymaker awareness.”
“The monumental TIF International Conference in Malaysia provided a vital platform for sharing best practices, discussing scientific breakthroughs, and fostering international collaboration to advance thalassaemia research and care Focus on low- and middle-income countries remained steadfast to alleviate patient burdens through targeted initiatives and sustainable solutions for equitable care provision ”
“Notable advancements included publishing ground-breaking Guidelines for the Clinical Management of α-Thalassaemia, a Clinicians Guide on Nutrition in Thalassaemia, and the 3rd edition of Guidelines for Non-Transfusion Dependent β-Thalassaemia, offering crucial insights for daily patient care.”
“Inaugurating new partnerships and strengthening existing ones with professional
associations were key highlights that enhanced multidisciplinary care understanding The debut of TIF Library Extended (TIFLiX), our flagship digital repository, offers extensive resources from TIF’s educational events ”
“Moreover, intensified efforts to improve patient access to both advanced and standard therapies for individuals with thalassaemia and other haemoglobinopathies remained a central focus of our work.”
“Reflecting on 2023’s achievements fills us with gratitude for our Members’ support healthcare professionals, academia, researchers, industry partners and most importantly, patients and caregivers Their resilience and support enable us to achieve even greater strides toward a brighter future for our communities ”
TASCA MONTHLY
Supacell has people talking about sickle cell disease. What is it? Who does it affect? And how common is it in Australia?
TASCA has spoken with ABC News to offer valuable insights into Sickle Cell Anemia for their recent pop-culture feature on the Netflix series "Supacell." We’ve included excerpts from the article below, along with a link to the full piece on the ABC News website. Be sure to check it out!
It'srevealedinseasononeoftheseriesthat thesupacellwhichgrantsthefivetheir powersisamutationofsicklecelldisease (SCD),ahereditaryconditionthataffects theshapeofredbloodcells.
InastatementtoABCNews,creator, directorandwriterofSupacell,Rapmansaid he'sproudoftheimpacttheshowhashad sincelaunchinginJune.
ByMawunyoGbohbo
Wed21Aug
TheNetflixseriesSupacellisaglobalhit. ManyAustralia-baseddevoteeswhospoketo ABCNewsbingedtheshow,butone Melbourne-based'Supafan'saidshewas holdingoffonwatchingthelastepisode becauseshecouldn't"bearforittoend". TheshowisaboutfivesouthLondonerswho unexpectedlydiscovertheyhave superpowers,butstillhavereal-world problemstodealwith,"becauselifedoesn't juststopbecauseyoucantravelthrough timewithasnapofyourfingers."
"Supacell was number one in the world, watched by millions and started an important conversation about sickle cell, encouraging people to learn more and speak about some of their own experiences," Rapman said.
"I'm still getting messages from young people and parents about how they now feel empowered to talk about it with their friends "I've always tried to authentically reflect the lives of Black people in my stories, so it's exciting that Supacell will return to Netflix for a second season "
Rapman has always said he had hoped this superpowered twist on sickle cell disease would "make the people with it feel empowered, make them feel seen, just give them a voice."
You may know someone with SCD Paula Shutt is the communications manager at the Sickle Cell Society in the UK and says Supacell has been a game changer in normalising discussions about the disease.
"I was excited because [Supacell] has reached as far as Australia," Ms Shutt told ABC News "It has reached the other side of the world
"It's opened the door to some conversations about things like sickle cell trait because they talked a lot about trait in the show "
Ms Shutt says people need to understand what sickle cell is. "So, there could be somebody that you study alongside, somebody you see every day, somebody you work with that has the condition, and you don't really understand why they disappear [or] why they might have been having regular medical treatment," Ms Shutt said. "But if you're working alongside them and studying alongside them, you could actually be a help to them and an advocate if they're not feeling well, if they have a crisis, and you're around."
'Sickle cell can affect absolutely anybody'
Ms Shutt says there are misconceptions about SCD. "It's seen as a condition that affects the Black, African, Caribbean community, and it predominantly does…but actually, sickle cell can affect absolutely anybody," Ms Shutt said.
"And what we're seeing now with changes in the diversity mix in [the UK] and in other countries, is that people that appear lighter skinned but are mixed race are turning up at hospital with sickle cell and being told, 'Well, you can't have sickle cell…it can't be that because you're not Black.'"
Ms Shutt is thrilled that popular culture has brought SCD into people's consciousness because it can help educate the community, but also medical professionals
...The health promotions officer at Thalassaemia and Sickle Cell Australia
Sally Barton says sickle cell affects red blood cells. "Red blood cells are meant to be sort of circular shaped," Ms Barton told ABC News.
"However, with sickle cell the red blood cells are literally a sickle shape, so it's like a banana shape. "And the haemoglobin in the red blood cells are very irregular as well So, they're meant to be a circle However, the haemoglobin, they're sort of strands They're sort of straight, irregular, non- uniform, which creates that sort of change in the red blood cell "
Ms Barton says it's a very painful condition and can lead to crises. "So, because the red blood cells, they're formed in sort of that sickle shape, and they're actually very sticky. So, they stick to our blood vessel walls and create blockages in the blood flow. "And it is extremely painful for patients…and there's also many other complications involved...
Mawunyo Gbogbo is an ABC journalist specialising in popular culture. She has worked in the media industry for more than 20 years, including as a features reporter for ABC Radio Sydney, a journalist for ABC NewsRadio, a reporter for the flagship ABC Audio Current Affairs programs AM, The World Today and PM, a segment producer for the Today Show on Channel Nine and as an associate producer for Insight on SBS TV, where she won a United Nations Association of Australia Media
Peace Award for Increasing Awareness and Understanding of Children's Rights and Issues Mawunyo is the author of Hip Hop & Hymns published by Penguin Random House.
TASCA MONTHLY INSERVICES
TASCA has recently provided in-services at Monash Health:
Sickle Cell Crisis
Thalassaemia patient lived experience experience
CAULFIELD GRAMMAR STUDENTS
Krish and William are two Year 9 students at Caulfield Grammar School completing a school project on Thalassaemia. Together, they are trying their best to raise awareness and support people with Thalassaemia. Krish personally wanted to do a project on Thalassaemia as several family members including his Mum and brother carry the condition and face difficulties living with it.
IronGIVE TASCA A VOICE AND BECOME A MEMBER TODAY
You can help support TASCA and its valuable work
You can be inspired by stories about the people we support You will be updated regularly on medical advances and clinical trials.
You will be invited to member events and programs. You will belong to a community supporting people living with a genetic haemoglobin condition
You will be part of a community voice advocating for better access to medical care.
Your membership will support Thalassaemia and Sickle Cell Australia’s important work
As a not-for-profit organisation, we need the support of the community to provide ongoing education, support and advocacy for the benefit of those living with, or touched by, genetic haemoglobin conditions
Membership is open to all interested individuals and organisations who want to support our mission.
