TASCA MONTHLY
Happy New Year and welcome to the first monthly newsletter for 2024.
We are looking forward to building on our successes from 2023 and creating greater impacts in the areas of community engagement, awareness and education.
OUR COMMITTEE:
YAs we currently have 3 vacancies on the General Management Committee I am calling for expressions of interest from any TASCA member who may be interested in being part of the organisation. The requirements are attendance at monthly meetings, as well as involvement in projects we run throughout the year.
Please find attached the Expression of Interest application form and also official requirements as per the TASCA Constitution Alternatively, you can use the QR code provided below
VOLUNTEERING:
I would like to express my appreciation to all who have offered to support us in different capacities. As a result of this interest we will be creating focus groups, which will be working with staff, Peter and myself, to assist in different areas
Social & Promotions Group
This group will primarily be involved in helping to organise community promotion activities, such as last year’s Christmas in July event and our annual Bunnings sausage sizzle We will also be looking at more media promotions opportunities, blood drives, festivals and school expos
Education
This group will primarily focus on broadening our school and community education programs by sourcing opportunities for us to present to a variety of groups, especially cultural and community groups
Please contact me on 0408341331 if you would like further information and would like to join one of these groups
TASCA MONTHLY
HOSPITAL LIAISON:
TASCA is expanding its outreach! We've recently visited Adelaide Women's and Children's Hospital and Perth Children's Hospital, and we'll continue to engage with interstate hospitals in 2024 to explore collaborative opportunities. Stay tuned for more updates on these exciting initiatives!
MEMBERSHIP:
As of this year, we will be reinstating membership fees. Our fee structure will be:
Paid membership - $20 per year, includes voting rights at the AGM as well as discounts at events we hold throughout the year
Non-paid membership – access to our newsletters. Life member status remains unchanged.
More information on when and how to pay will follow soon, however if you have any questions about the status of your membership, please feel free to contact the office or myself.
WEBSITE:
This project is almost complete and we will be able to launch it officially soon, More details will follow so please keep an eye out for announcements on our social media platforms
BLOOD REGISTRY:
Please see attached document regarding the Blood Registry project from Monash University. There will be more details to follow, however we are hoping that our members will consider this project as a way of us capturing the number of both paediatric and adult patients n Australia with a view to having accurate details when liaising with pharma companies bringing new innovations in care and treatment of haemoglobinopathies
TASCA MONTHLY
TIF NEWS:
During the festive season, there have been a number of announcements from TIF with regard to new research results and innovations in treatment options We publish these on our social media platforms but you can also access the information from the links below.
https://thalassaemia org cy/news/a-year-in-retrospect-global-public-health-achievements-and-challengesin-2023/?
fbclid=IwAR1HoukbAYEpgfoCMfLTqeeMMhVQsRr6z3 FwkoLpwtOKaeMFIRsWsouJ9Y aem
AR5AT6LBSU6EyE
ZDTuSowzMD4VMqPG38ZhWgPTbtVdAGp8eBJL8dVUgr2o0aCpHTZ-4
https://investor.agios.com/news-releases/news-release-details/agios-announces-phase-3-energize-studymitapivat-met-primary?fbclid=IwAR1qni9QknTXpLhsZmor1FZEJslPM5rmw1NwvoJjsUhy6amEYqcQeFDBLw aem
AR7MIwOmROUuz672R6t6i-liv62tW06sECqMJu4xTqI8mi9OR4PrX3xTLNLPpArzsWE
TASCA MONTHLY
TIF NEWS:
https://www.hematologyadvisor.com/reports/luspatercept-beta-thalassemia-erythroid-response-treatmentrisk/
https://news.vrtx.com/news-releases/news-release-details/vertex-receives-chmp-positive-opinion-firstcrisprcas9-gene?
fbclid=IwAR3WJ43v7hoPGivrCrIkz57yfmNGbKuUWzyuao EUfmf4e95b8QbMCBrXU0 aem AR5nNLcX0gqJjLhu ka92RKUV-HtLU2Lq9Crlwxkr5q0a37YnMP30bB9ZvBnltTt5LZo
Pat Bollard (TASCA Chair)