World Sickle Cell Day Light Up

In recognition of World Sickle Cell Day on 19th June, Thalassaemia and Sickle Cell Australia has organised the 2nd annual light up of landmarks in Australia. 

 

Share your photo with #LightUpForSickleCell to raise awareness!

 

This year, the following buildings will light up:

 
June 17th
  • Trafalgar Bridge and Perth Council House, WA 
June 18th
  • Bolte Bridge, VIC
June 19th
  • Telstra Tower, ACT
  • Embassy of Greece in Canberra, ACT
  • The Bell Tower, Perth, WA 
  • Palmerston Water Tower and Frances Drive Light Pole, Palmerston NT 
  • Monash Park Tree and Mooroopna Water Towers, VIC
  • Launceston Town Hall,  TAS
  • Adelaide Town Hall Balcony, SA 
  • Story Bridge, Victoria Bridge and the Reddacliff Place sculptures, QLD 
  • Kurilpa Bridge, QLD 
  • Newcastle Clock Tower, NSW
 We want to thank all our light up partners that made this possible! 
  • Adelaide City Council
  • Brisbane City Council
  • City of Launceston
  • City of Newcastle
  • City of Palmerston
  • Embassy of Greece in Canberra
  • Greater Shepparton City Council
  • Telstra
  • The Bell Tower
  • Transurban
  • Queensland Department of Energy and Public Works

Team Lucas – 31 Donors in 31 Days

Ella, one of our awesome members, is doing something amazing this May.

She will be holding a blood drive for her son, Lucas’, birthday. (The same Lucas doing awesome things with his bike ride for Make-A-Wish foundation).

If Ella gets 31 donors in the 31 days of May, she will shave her head!

Make it happen by joining the Australian Red Cross Lifeblood team “Team Lucas – 31 Donors in 31 Days” when making an appointment or by speaking to the nursing team on arrival for a donation.

Share this with all your friends to make this happen!

Great work Ella and Lucas!

International Thalassaemia Day 2021

NICOSIAMay 5, 2021/Thalassaemia International Federation (TIF

MARKING International Thalassaemia Day on 8 May, the Thalassaemia International Federation (TIF) gives voice to countless individuals with thalassaemia all over the world who continue to encounter pronounced challenges in terms of access even to basic health, social and other care, necessary for their survival and well-being.

International Thalassaemia Day is devoted to raising awareness amongst the general public and decision-makers about thalassaemia, and helping the global thalassaemia community connect and call for changes towards the improvement of lives of patients with this inherited, debilitating blood disorder.

The 2021 theme ‘Addressing Health Inequalities Across the Global Thalassaemia Community’ was carefully selected to spotlight the many and multifaceted unmet needs of patients with thalassaemia which, coupled with the tragic COVID-19 pandemic consequences, have further exacerbated health inequalities that afflict the global thalassaemia community.

Indeed, published evidence and TIF-collected data suggest that in most countries where thalassaemia exists, patients with β-thalassaemia do not reach or surpass the age of 20 years old, while less than 20% of patients with the disease globally receive appropriate and timely blood transfusions and iron chelation therapy.

Albeit impressive scientific advances in the prevention and management of thalassaemia, leading to improved survival and quality of life of patients, the majority of individuals with the disease, residing mainly in low- and middle-income countries of the world, still face an increased risk of morbidity and mortality at a young age, due to the suboptimal care they receive. Today we call for the intensification of concerted efforts and collective mobilization by all related stakeholders to change that”, said Dr Androulla Eleftheriou, TIF Executive Director.

”The International Thalassaemia Day is a vivid reminder of all the people we have lost along the way towards better prevention and management of the disease, and an opportunity to renew our promise to keep fighting for the benefit of our community, until a final cure for thalassaemia is accessible to every patient”, added Mr Panos Englezos, TIF President.

In celebration of the International Thalassaemia Day (ITD) 2021 and seeking to highlight the importance of thalassaemia as a worldwide, major public health issue, TIF has prepared a wealth of online activities, which include a massive global campaign featuring various awareness and communication resources, the ITD 2021 Official Video and an online photo exhibition.

In addition, TIF will host a Virtual High-level Event for the official premiere of the ‘Global Thalassaemia Review’, a particularly ambitious work of the Federation, fruit of its official collaboration with the World Health Organisation (WHO), developed with the objective to document and assess the existing services for patients with thalassaemia all over the world.

The event will open a welcome address by WHO Director-General, Dr. Tedros Adhanom Ghebreyesus, whilst high-ranking representatives of international patient organizations, prominent academics and many other internationally renowned figures operating in the haemoglobinopathies field, will also actively participate.

Eliminating health inequalities, so that patients with thalassaemia receive the same quality of care wherever they may live and enjoy a full social and professional life is our collective responsibility.”

Employment Rights living with Chronic Illness – Gabrielle Marchetti

Navigating work with chronic illness is tricky! Get to know your rights as Gabrielle Marchetti from Jobwatch walks us through the common questions chronic illness sufferers have on this issue. If you have any questions for Gabrielle, she would love to answer them! Send them through to hpo@tasca.org.au. This video was recorded as part of TASCA’s Mindfulness and Wellbeing Program.

TASCA Newsletter (Autumn 2021)

The latest TASCA newsletter is out now. Have a read and get updated on all of TASCA’s activities and advocacy work! 

Contents:

  • Our New Ambassador
  • Committee Updates
  • TIF Conference
  • Rare Disease Day
  • Lucas Garage Sale
  • Decathlon BBQ
  • International Women’s Day
  • TASCA’s Christmas Wrap Up
  • TASCA 4 Kids Page

Want a physical copy? Let us know by sending a request through email.

You can also download a PDF here.

View previous newsletters here.

TASCA Easter Basket Raffle

Win an Easter Basket!
Filled with all the chocolate goodies you need to enjoy easter including eggs, hot chocolate and smores!
 
Put your name in for the draw when you next visit Monash Medical Centre or Royal Melbourne Hospital for your treatment before 31/03 for a chance to win this fabulous basket.
 
Happy Easter everyone!

University of New South Wales Preimplantation Genetic Testing Survey

Couples’ decision-making when considering preimplantation genetic testing (PGT) because of a hereditary condition

Researchers at the University of New South Wales are recruiting participants to consider a research study titled “Couples’ decision-making when considering preimplantation genetic testing (PGT) because of a hereditary condition”. Preimplantation genetic diagnosis (PGD) is a reproductive technique used to test embryos to determine whether they are affected by a particular genetic condition. It is also known as “Preimplantation Genetic Testing for monogenic/single gene defects” or “PGT-M”.

This research study aims to investigate couples’ decision-making towards using PGT-M by using an online survey.

You and your partner are eligible to participate in this study if you and your partner are at risk of having a child affected by a genetic condition and are either considering using PGT-M or have already undergone PGT-M.

Participation in the study would involve completing an online questionnaire, which will take about 15 minutes. If you have a partner, and your partner is also interested in participating in our study, please forward this email to your partner. The Participant Information is included in the link below, which provides more details about this study and describes what participation will involve. The first 200 individuals who complete the questionnaire will be provided with a $30 Coles gift card to reimburse their time. Participation in this research is voluntary. Your decision regarding whether to take part will not affect your relationship with your doctor and UNSW.

Though both you and your partner are encouraged to take part in our study, only one individual’s participation is also welcome. If you are interested in participating in this study, please click on the link relating to the appropriate questionnaire version below.

Link 1: Questionnaire for women who have undergone PGT-M (PGD)

Link 2: Questionnaire for women who are considering PGT-M (PGD)

If your partner is interested in participating. We ask that your partner click on the link to the appropriate version below or copy and paste the URL into an internet browser:

Link 3: Questionnaire for partners of women who have undergone PGT-M (PGD)

Link 4: Questionnaire for partners of women who are considering PGT-M (PGD)

If you or your partner have any questions, please contact the Research Coordinator, Ms Lin Cheng at UNSW (email: lin.cheng@student.unsw.edu.au or call 1800 814 403 for free). 

You can also contact the Coordinating Principal Investigator Professor Bettina Meiser via email address: b.meiser@unsw.edu.au or call 9385 0025.

TASCA 4 Kids: Easter Activity Sheet

Easter is coming up!

Print off our Activity Sheet and have some fun this Easter!

You can upload you completed activity sheet below and have it be published on the TASCA 4 Kids page!

Send us your Activity Sheet