TASCA Newsletter - Issue 5 May 2024

TASCA MONTHLY

PatBollard Chairperson, ThalassaemiaandSickle CellAustralia

Greetings and welcome to the May edition of our TASCA Newsletter! This month, we

From the Chair

We're excited to share the latest research initiative from the University of Sydney, titled “High-cost gene therapies: understanding patient, consumer and societal values, perceptions and preferences”. This study delves into the values, perceptions, and preferences of patients and their families, and is now taking participant expressions of interest. Dive deeper into the details on page 9.

Lastly, we are excited to provide you with updates on our ongoing projects and initiatives Thank you for joining us on this journey as we strive to make meaningful contributions to the lives of those impacted by Thalassaemia and Sickle Cell Anaemia.

Photo: TASCA and Muskaan Care Trust Front: Kate, Nivedita, Pat Back: Vivek, Sally, Peter

ITD 2024 ITD 2024

We visited treatment centres across Melbourne to raise awareness of International Thalassaemia Day, and to meet patients and treating teams.

We wore red – the TIF and International Thalassaemia Day key colour- and took a selfie to raise awareness through our social media channels

Muskaan Care Trust New Zealand

(Thalassaemia and Sickle Cell Anaemia NZ)

Muskaan Care Trust NZ is carrying on the legacy of Muskaan Vij who lived with

#ProtectionThroughPrevention

committed to providing unwavering support at every step of their journey, mirroring the support any other citizen receives in Aotearoa. Our priority is "Protection Through Prevention," achieved through screenings, awareness, and education campaigns to prevent future generations from experiencing these lifelong disabilities and disorders. empowering, and taking action. Muskaan Care operates with CORE Principles of MAORI TIKANAGA, emphasizing active Protection, Partnership, and Participation,

along with Awareness, Advocacy, and Action. We are dedicated to "Leaving No One Behind," particularly individuals facing disadvantages such as disabilities, health issues, emotional challenges, and mental h l h di i

Our efforts aim to create a more equitable and resilient society & networks by addressing social, cultural, and health disparities. Through initiatives that encourage social connections, provide access to community activities and wellbeing, services and enhance skills and creativity, we strive to build community resilience and foster lasting positive impacts. Join us in our mission to empower and uplift communities holistically across New Zealand and globe.

For more information, visit www.muskaancaretrust.org.nz Muskaan Care Trust NZ email: tascanz@muskaancaretrust.org

Photo above: Health Promotions Officer Sally (TASCA) with Vivek and Nivedita from Muskaan Care Trust, visiting Monash Infusion Unit, Clayton VIC

Photo left: TASCA Chairperson Pat, with Nivedita and Vivek at the TASCA Office

LIGHT UPS! LIGHT UPS!

The ‘Bring Thal to Light’ initiative, took place on May 8th, 2024, and served as a beacon of hope and solidarity for the global thalassaemia community.

By illuminating in red landmarks and monuments across the world, a chain of lights connects us all in our shared efforts to change the landscape of this lifelong condition. The dazzling display not only raises awareness about the condition and its impact on patients and society but also pays tribute to those living with thalassaemia Furthermore, it acknowledges the altruistic individuals who generously donate blood to help others survive and thrive.

Victoria Bridge, QLD

Telstra Tower, ACT

Monash Civic Centre, VIC

Monash Park Tree, VIC

Glen Eira Town Hall, VIC

Stoney Bridge, QLD

Dandenong Drum Theatre, VIC

Glen Eira Town Hall, VIC

Stoney Bridge, QLD, with our Volunteer Riona

TASCA MONTHLY

TASCA’S LIGHT UP LOCATIONS ACROSS AUSTRALIA

Kingston City Clocktower

AAMI Park

Bolte Bridge

Mooroopna Water Tower

Riverlinks Eastbank

Monash Park Tree

Civic Centre, Monash City Council

City of Glen Eira (Town Hall Portico entrance)

Drum Theatre/Old Town Hall, City of Greater Dandenong

Catenary lights Geelong (Moorabool St x Malop St)

Lane Cove Tunnel (Sydney)

City of Newcastle Clocktower

Kurilpa Bridge

Story Bridge

Victoria Bridge

Reddacliff Place Steam Sculptures

Wickham Terrace Car Park architectural wall

Breakfast Creek Bridge, Newstead

Palmerston Water Tower

Palmerston Recreation Centre

Telstra Tower

GENETIC COUNSELLING STUDENTS

We would like to welcome Hannah and Lily who are studying Genetic Counselling at The University of Melbourne. They will be completing their placement with us over the coming months.

Hannah is a first-year Master of Genetic Counselling student from the University of Melbourne and is completing her community placement at TASCA. Having recently completed a Bachelor of Science, majoring in genetics and genomics, Hannah has a passion for genetics, providing patient care, and helping individuals and their families learn about their genetic health This passion has been largely shaped by her own personal diagnosis of a rare genetic disorder Recently discovering that Alpha Thalassaemia runs in her family and that her sister is a carrier, Hannah is eager to volunteer with TASCA.

Lily is currently studying a Master of Genetic Counselling with the University of Melbourne and has joined the TASCA team as a volunteer through a university community placement. Lily is very friendly and very passionate about educating the community and raising awareness about all types of genetic conditions, including Thalassemia and Sickle Cell. Lily is an avid blood donor, putting her 0- blood to good use supporting Thal patients and the wider community. In her work life, Lily assists the genetic counselling team at an IVF clinic In her spare time, Lily enjoys doing fun new activities with friends and pampering her two cats

TASCA MONTHLY

Researchers at the University of Sydney are conducting a research study to find out what people with particular blood conditions, and their families, think about gene therapy. They will hold face to face and online focus groups and interviews to hear participant views. Ultimately, this information will help to inform government decision makers in their assessments of new gene therapies

The Researchers are seeking adults with haemophilia B (Factor IX deficiency), betathalassemia or sickle cell disease and/or their immediate family members from across Australia. Participants will need a sufficient level of English to be able to understand and contribute to the discussions.

Taking part in this study will involve registering an Expression of Interest to provide some brief information about yourself, and also your contact details to receive further information. If you consent to participate, they will collect further information on the day of the focus group/interview, which will be anonymous. They will provide some background information on gene therapy, and then hold a discussion on what you would value and prefer if you/your family member were to receive gene therapy. Please note this research study does not involve actual provision of gene therapy, it is focused only

on understanding patient, consumer and societal values, perceptions and preferences. Focus groups or interviews will be 1.5 hours long, with face to face sessions planned for greater Sydney, Melbourne and Brisbane areas. Online options will be available for those who are unable to participate in person. If you choose to participate, you will be reimbursed for your time, and for your travel costs for face to face groups.

Please contact Professor Kirsten Howard, Menzies Centre for Health Policy and Economics, Kirsten.howard@sydney.edu.au, 02 9351 2587 if you have any questions about this study.

You can also contact Pat Bollard, Chairperson at TASCA on (03) 7015 5637, info@tasca org au

This study has been approved by the Human Research Ethics Committee (HREC) of The University of Sydney [INSERT HREC Approval No. once obtained].

To register your interest for this study, please click the following link: Expression of Interest form for patients and family/carers (sydney.edu.au) or use the QR code below.

TASCA Membership

Your membership will ensure that:

Greater representation from the community is given to TASCA for a more powerful voice to advocate for patient wellbeing. Vital funding is made available, TASCA’s work to support. You have a chance to shape the future of TASCA with member voting rights at general meetings

You are kept up to date with all of TASCA’s activities

Membership is open to all interested individuals and organisations who want to support our mission. You can join via the link below:

https://www.tasca.org.au/become-a-member/

Your feedback on our newsletters is valuable to us. Share your thoughts and tell us what matters to you. Contact us at:

Email: info@tasca org au Phone: (03) 7015 5637

TASCA’S INTERSTATE BLOODDRIVE

Gather your friends, family and colleagues to donate blood on behalf of your state!

Each blood donation will be counted towards your state's total score. The state with the highest number of blood donations will be crowned the champion.

How to get involved:

MAY - JULY

Contact your local blood donation centre to schedule your donation appointment.

Donate blood and mention Thalassaemia and Sickle Cell Australia's Interstate Blood Drive Competition.

Encourage others to donate on behalf of your state!