A QUICK ASCA UPDATE
With our August 2020 newsletter around the corner, here are some highlights that we can't wait to share with you all. As we all continue doing the best we can during the Covid-19 pandemic especially in Melbourne, we have resorted to using social media, a tool that we are very familiar with as we worked using this platform the first four years of the informal patient organisation until we got registered as a not for profit organisation. Our thoughts are with people directly affected by the covid-19 as we continue to keep safe and follow the instructions from the authorities. See these important updates that we have been up to. Our full August update will be out in a few days.
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ASCA SA LAUNCH
Please join us for our official virtual launch of ASCA SA featuring special guest speakers:
Maria Vamvakinou MP and Peter Khalil and a special introduction to our newest ambassador Kali Holmes radio presenter 2RRR.88.5. Expert presentation by Dr Manika Pal Paediatric Haematologist.
26th Sept 2020
3.00pm to 4.30pm AEST.
Webinar ID: 944 1241 6088
Passcode: 933453
You can get a joining link here.
According to experts, the number of people affected by SCD is rising across Australia. In South Australia, there about 20 people living with SCD, and this number is expected to rise in the coming years.
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SCD COURSE
The Sickle Cell Disease course designed by ASCA and hosted by APNA went live on 19th June 2020. ASCA gave out 10 courses in total, including two courses which went to African countries. Nurses from Queensland and South Australia have benefited from the available courses. With only 10 courses available to us, we still have inquires coming but at this point we are unable to offer these courses due to no funds available. The good thing is that we are working on either getting a sponsorship to purchase a few courses again or we will have the course hosted on or website at which point, it will be cheaper to provide this course to clinicians needing it most. Stay tuned, we will update soon. See the course link here.
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ASCA SICKLE CELL CONFERENCE
ASCA is working in conjunction with The Blood Meeting 2021, to bring you the first ever sickle cell disease conference to shine the light on this condition in Australia. Our Theme is Breaking The Barriers, A New Horizon. This event has been planned to be face to face or in the unfortunate instance that Covid-19 will still be an issue next year, we will then have it virtually. This will be a dual conference with a parallel session for patients and Caregivers. Some sessions have been designed to happen concurrently. We are in the process of making sponsorship packages and we are appealing to sponsors from all over the world. The event will be held in Adelaide South Australia and to be help a day before The Blood Meetings. See the conference website for more details here.
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AMPLIFY SCD VOICES
As stated before we have been engaging with the sickle cell community to enhance awareness about this condition. Our initial plan was to have discussions and education sessions on our platform using zoom and Facebook live. As the months went by, we received very good feedback and we started inviting people and clinicians from all over the world. September is considered the sickle cell awareness month in most parts of the world. We have therefore joined the sickle cell community and we offered our platform by inviting over 40 people from over 20 countries all affected by sickle cell in what we are calling Amplify Sickle Cell Disease Voices Series. The series will run up to 9th January 2021. We have three French sessions to be hosted by our Board Secretary Nathalie who is bilingual. Register to attend these series to know the issues affecting this community of people. Link to register is here:
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More sickle cell stakeholders from other parts of the world.
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Another group of sickle cell stakeholders from French speaking background.
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KEEP FIT FOR ASCA
ASCA is a not for profit organisation with a charity status and DGR certification. We are grateful companies like Novartis, CSL and Stocklands and RSL Pascoe Vale who supported our work in the past two years.
We have many projects lined up and other community outreach programs.
Starting this summer we will launch a fundraising initiative. Support us by taking part in Keep Fit for Sickle Cell initiative. We have three different activities to choose from and follow four simple steps:
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Zumba / Dance for sickle cell
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Virtual Walks for Sickle Cell
- Meditate / Yoga for sickle cell.
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Choose an event
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Join us with a virtual instructor,
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Pick a fundraising goal
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Invite you family and friends. keep fit for sickle cell together
More details coming.
See a sneak peek of our fundraising website here.
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DEDICATED SUPPORT FOR SCD
We are now in week four of our series and this week we are discussing The need to have Dedicated support for people living with sickle cell. While most dedicated services could be happening in Australia for example, this is not the same for most people affected around the world. We bring caregivers, patients and clinicians to discuss different sub-topics surrounding the main topic. Joins us tomorrow 19th September 2020 at 9pm AEST. Register to attend this session, link here
Hosted by Agnes Nsofwa - Caregiver and Executive Director ASCA.
Hosted by Mrs. Sylvia Mwansa - Caregiver and Business agent / Motivation speaker
Professor Isaac Odame - will present from a Haematologist point of view. Prof Odame is Professor and Alexandra Yeo Chair in Haematology, Medical Director, The Global Sickle Cell Disease Network, Centre for Global Child Health - The Hospital for Sick Children.
Anna Duncan - will present from a Clinical Nurse point of view. Anna is the Sickle Cell dedicated nurse at The Royal Children's Hospital
Panelists:
- Dr Musonda Mwilwa SCD Warrior - Zambia
- Sophia Anna - SCD Warrior - Australia
- Oluyemi Moses - SCD Warrior - America
- Gautam Dongre - Caregiver - India
- Natasha Kashito - SCD Warrior - Zambia
Register for this zoom Register in advance for this webinar here:
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