Welcome to our latest issue of the ASCA newsletter, sharing information from July to August 2020.
Australian Sickle Cell Advocacy Inc August 2020 Newsletter
Supporting people affected by Sickle Cell Disease in Australia
Message from ASCA Director
It’s already two months since our official update. Time goes so fast and we are already in September. As we enter spring season in Australia, the cold feeling is still evident most times especially in Melbourne where ASCA's main office is situated. We are still going through the pandemic and for us this period turned out to be one of the busiest periods of our work. We went back to the basics of our work.
When this initiative started almost 7 years ago, we connected with people using social media. During this period we went back to doing what we know best, only this time we are connecting with the world live on Facebook. We have partnered with different organisations and individuals around the world. But as we do this, we cannot forget to remember all the people who have lost their lives due to the pandemic, especially the elderly in Victoria.
Our thoughts and prayers go to the families of those we have lost and those still affected in one way or another. For this reason, ASCA is offering emergency Covid-19 kits to families of people living with Sickle Cell Disease in Australia. Find out more in this issue.
In our last issue we updated the significance of June 19th in our calendar. It is the day when we recognise everyone living with Sickle Cell Disease. Our theme for this day was Know Your Sickle Cell Status. See more details about different events we organised for this day. As we enter spring, we also join the majority of the world to observe September as a sickle cell disease awareness month. We have continued with the theme to encourage anyone originating from places where sickle cell disease is prevalent to get tested. In Australia, this test is free for Australian Residents.
See more details about this in this issue. On another note, I am excited to welcome our ASCA newest member Kali Holmes who is joining us as an official ambassador. Kali is a radio presenter from 2RRR 88.5FM. I am equally excited to welcome our two volunteers who have joined our team, Chloe Pike and Savio Nano. We are grateful to Genetic Support Network of Australia who organised Chloe and Savio to join our team. Chloe and Savio will help us to design education materials and do research work.
Finally, we would like to thank everyone supporting us in one way or another for us to realise our dream of improving the lives of people affected by Sickle Cell Disease in Australia. The journey has not been easy with a lot of obstacles along the way, but we do not give up. We are now officially registered in New South Wales, Queensland, Western Australia and South Australia. Although mobilising our different teams has not been easy due the Covid-19 pandemic, we are confident that once this period is over we will commence our work in these states at full capacity.
On a positive note, we excited to mention that our South Australian Chapter will be holding a virtual official launch. This is happening today 26th September 2020 at 3:00 pm to 4:30 pm. Join us by zoom, register here. As we continue our work, we would like to thank Novartis for supporting our work for the second year. We would like to appeal to other organisation to support our cause. Donate toward our fundraising initiative this summer, details about this also in this newsletter. Thank you, Agnes Nsofwa.
ASCA COVID-19 Emergency Kits
As we continue going through these tough times of Covid-19, ASCA would like to make a small contribution to assist those with Sickle Cell Disease by providing free COVID-19 emergency kits. With the support from Novartis and The Victorian State Department of health, we have put together emergence kits which will be sent to our members on record. We also have the majority of people affected that are just known to the hospital personnel and we have contacted all Haematologist Teams treating Sickle Cell Warriors in Australia to help us connect with them. ASCA COVID-19 Emergency kits contains face masks, hand sanitizer, thermometer, and plenty of information on COVID-19, Sickle Cell Disease and Sickle Cell Trait. If you live in Australia living with Sickle Cell Disease, get in touch with us or your Haematology, team to get your kit.
ASCA SA LAUNCH
We are excited to announce that the South Australia Branch has officially joined Australian Sickle Cell advocacy.
With Chapter Organisations and representatives now in all major States in Australia, we excited to invite you to the official launch of ASCA South Australia.
Due to covid-19, the event will go virtually. Meet our special guest speakers: Maria Vamvakinou MP and Peter Khalil our official Organisation Ambassadors. We will also be introducing our newest ambassador Kali Holmes radio presenter at 2RRR.85
Expert presentation by Dr Manika Pal Paediatric Haematologist.
26th September 3.00pm to 4.30pm AEST.
Join our webinar: 944 1241 6088
Passcode is 933453
World Sickle Cell Day
The United Nations General Assembly adopted a resolution on 22nd Dec 2008 that recognizes sickle cell disease as a public health problem and “one of the world’s foremost genetic diseases.” The resolution calls for members to raise awareness of sickle cell on June 19th of each year at national and international level. Although this day is not officially recognised on the Australian calendar, we joined the world to observe this day. We are however in the process of asking our policy makers to help us have this day officially recognised in Australia. This year Australian Sickle Cell Advocacy engaged in various activities to observe this day. Our major theme for the day was Know Your Sickle Cell Status.
The most significant event was the involvement of both Federal and Local Ministers to encourage Australiansat risk of having the sickle cell gene to get tested. ASCA was also able to connect with Federal Minister of Health to put a message to observe this day, for the first time in Australia to have a sitting Minister address people affected by Sickle Cell Disease.
We also run a national radio and TV appearances to update the public about this genetic disorder. A total of 27 radio interviews were conducted and one TV appearance with SBS. See the video about the event here .See the link to different radio interviews here. To see the full June 19 events,see this link
Another significant event held for world sickle cell day 2020 was the Virtual ASCA E-Conference. The Conference theme was Psychosocial Effects of Living with Sickle Cell Disease.
With Panelist from different parts of the world, this conference attracted more than 70 participants with 11 contributors on zoom. The conference went for 2.5 hours with experts including Mental Health expert, Haematologist and Keynote Speaker Hon Maria Vamvakinou, official ASCA ambassador. See the conference here.
A day before World Sickle Cell Day 2020, ASCA held yet another important panel discussion to observe National Blood Donor Week. ASCA brought together Australian Red Cross Lifeblood representatives, Haematologists and People affected by Sickle Cell Disease (SCD).
Discussions was around the importance of blood transfusions and red cell exchange treatment for the management of Sickle Cell Disease. We had representatives from people affected by SCD around the country and Haematologist from South Australia, Queensland and New South Wales.
This session was really important to bring all the stakeholders in one room. Dr Peter Daly from Australian Red Cross lifeblood gave a presentation as well as contributions from Haematologist, Prof Joy Ho AM, Dr Ben Saxon and Dr Kolbe joined as well.See the full Video here.
300,000 babies are born with severe forms of sickle cell disease annually Experts estimate that by 2050, over 14 million babies will be born with SCD.
Sickle Cell Disease (SCD) is the most common inherited blood disorder in the world Over 250 million people worldwide have the sickle cell trait with the majority unaware”
Australian Sickle Cell Advocacy is raising awareness of SCD and encouraging Australians to get tested for the sickle cell trait to protect the next generation. Experts predict that there are about 1000 people living with SCD in Australia
Sickle Cell Awareness Month
September is considered as the “Sickle Cell Awareness Month” in most parts of the world. This is however not recognised in Australia. ASCA has joined the world to also do our part and increase the awareness to shine the light on Sickle Cell Disease. Sickle Cell Disease is the most common genetic disorder in the world affecting millions of people.
The theme we started on 19th June continues in September and the rest of year asking people at risk of having this condition to get tested. We are calling it ASCA Tested4SickleCell Challenge. To take part follow these four steps, together we are working towards reducing the prevalence of this condition.
1. Ask your GP for an electrophoresis blood test for #SickleCellTrait
2. Get a photo of you getting the blood test (In Australia, this test is free for residents).
3. Post the photo on social media and Tag Australian Sickle Cell Advocacy & #Tested4SickleCell
4. Invite / tag your friends to get tested too.
We are continuing with the “Know your Sickle Cell Status challenge” to encourage those with risky backgrounds to get tested. It is important to get tested as majority of affected individuals do not know they are a carrier, that’s why we are encouraging you to take these 4 steps to join us in the fight against sickle cell disease.
* Don't be caught off or don't let our children be caught off.
You can only know your sickle cell status if you get tested.
Thank you for your support.
During the Covid-19 pandemic, we have resorted to using social media to do our work. Since May 2020, we have been engaging with different stakeholders to discuss different topics in Sickle Cell Disease. We have had different topics and guests. All our topics and guests were particularly important to enhance sickle cell awareness. Some of the highlighted sessions are below. To see all the sessions seethis link here.More sessions are here
With Sophia-Anna
On the 18th of August we talked with Sophia-Ann from South Australia who battles with sickle beta thalassemia and Vascular Necrosis which can be a common side effect of Sickle Cell. She talks about her experience and dealing with her diagnosis of Sickle Cell throughout her life.
Suffering from a rarer form of Sickle Cell and being told she would never be able to walk again at the age of 25 Sophia has fought against defying odds, her story was empowering to those affected by Sickle Cell. Sophia is also a part of our South Australian ASCA team and also advocates for invisible illnesses via a YouTube channel. See Sophia's interviewhere.
Jackie Moore
On July 10th we were lucky enough to speak with one of our own Jackie Moore on her experience living with sickle cell for more than 6 decades. Jackie’s outlook on life is absolutely amazing despite her battles, she advocates to all warriors to be encouraged and to always have a positive mindset. Jackie has also written a book about the challenges of Sickle Cell to share her journey with others, it's called HbSS: Sticks and Stones, Blood and Bones: A Personal Journey. See Jackie's interview here.
With Teonna
Teonna shared her story all the way from Baltimore on the 23rd of July, she is a Sickle Cell Warrior and advocate. She is a true fighter pursuing her dream of working towards becoming a clinical psychologist despite all her challenges. This is a special story as Teonna expressed her difficulties with experiencing a failed bone marrow transplant. She dives into the metal aspects associated with the treatment and life after. If you would like to learn more you can find the full interview here.
The Genetic Counselling Education Session
On the 12th of August Carolyn Cameron joined us from Monash Health. She is a genetic counsellor specialising in Sickle Cell Disease among other conditions. As genetic counsellor her role is to educate families on the genetic aspects of a disease. As a genetic counsellor she also helps families deal with new diagnosis or challenges faced medically and psychologically with the disease.
They can also explain the implications it may have within the family and testing and screening available. Carolyn explains quite in depth about Sickle Cell itself as well as the carrier screening Sickle cell warriors and genetic tests available for individuals planning to have a child. You can listen to Carolyn’s full session click here. See the details at the end of the session to find out Carolyn's details.
A ten-part series discussion to amplify our SCD voices will start on the 29th of August and every fortnight thereafter. It will present discussions on relevant topics within the Sickle Cell Disease community. The ten-part series will involve Sickle Cell warriors, health professionals, caregivers and all other stakeholders across the globe. We invite you to join us in raising awareness on Sickle Cell all over the world strengthening Sickle Cell patients and fighting stigmas. See more here.
Bone Morrow Transplant Education Session
Dr. Vikas joined us from India to present information on bone marrow transplant specifically for Sickle Cell patients. Bone marrow transplant is the only currently known cure for Sickle Cell Disease, however, is not always successful. Dr. Vikas covered a variety of information on the disease and the process of a transplant among a few responses to common questions patients may have.
It is important to fully understand the implications of a bone marrow transplant before treatment to learn more about the method watch the full video here. Dr Vikas was joined by Teonna who had a bone marrow transplant to cure SCD, however, this treatment failed. Dr Vikas answered questions from Teonna and some clarifications were sort. We would like to extend a thank you to Dr. Vikas for taking time out of his day to come and talk with us and educate us more about bone marrow transplants.
As an extension to these talks now called SCD Talks with Agnes, we have brought over 40 people from over 20 countries all affected by Sickle Cell Disease one way or the other. As a world first, Australian Sickle Cell Advocacy Inc, brings you a live global discussion on relevant matters within the sickle cell community from sickle cell warriors, health professionals to caregivers and all other stakeholders. The series started on the 29th of August to run every Saturday until 26th September.
Thereafter they will run every two weeks. We have three sessions in French and the first session will be on 3rd October 2020. The objective of this initiative was simply to bring people in the sickle cell community from different countries tell their truth and shine a light on sickle cell disorder while promoting practical solutions for enhancing the lives and livelihoods of warriors. Our series are conducted via zoom and shared on Facebook Live.
ASCA decided to use our platform to bring together all stakeholders all fighting the same enemy… Sickle Ce ll Disease. So, join this cause, no matter where you all or your capacity in the sickle cell space. All you need is internet access to join zoom or Facebook.See more information here.
UPDATE ON ASCA COURSE
The ASCA designed Sickle Cell course was launched on 19th The World Sickle Cell Day. As promised, we gave away 10 courses. The course had good reviews with more nurses writing us to have access to this course. We have embarked on approaching different potential sponsors to assist us with hosting this course on our website without any luck. We are still looking for avenues to have the course on our website.
Once we host this course, we will be offering it at a fraction of the current cost for us to ensure that we can continue maintaining the cost of hosting the course on our website. To see some nurses who completed this course, pleasesee this link. To see more requests for this course see this link. Watch this space for other similar courses as well as a Thalassaemia course that we are helping APNA to design too.
Support Group Meeting
On the 23rd of August ASCA hosted its first second support group meeting this year. Due to Covid-19 pandemic out meeting was held virtually. It was fantastic to see so many amazing and strong people come together to support each other. Our informal catch up dwelled around finding out how people are coping during this pandemic. We discussed upcoming educational booklets and information across other avenues. ASCA will be holding support group meetings bimonthly and invite you to join us. To join our team and connect with other people affected by SCD in Australia, register your details here.
Fund raising Initiative
As discussed in the ASCA update last week, we are starting a find-raising initiative this summer. Keep Fit For Sickle Cell. Designed for the whole family, we ware bringing Fitness instructors to help us with virtual exercises ranging from Zumba / Dance, Virtual / indoor walk and Meditation/ Yoga.
Pick an event, set a fund raising goal, team up with family and raise funds for ASCA while keeping fit with the whole family. See our our work in progress website for this initiative here: https://ascakeepfit.raisely.com/ It's ok to register now. So go ahead be the first to register before we launch this initiative. Thank you for your support.
Sickle Cell News …
See some of the events that happened this year and other updates that has a greater impact on anyone living with sickle cell disease including those in Australia.
We are excited to announce that a QLD branch has officially joined Australian Sickle Cell advocacy family. We are in the process of organising a virtual launch too, and we will update soon.
Watch this space to see how you can get involved.
KIDS CORNER :
Coloring Sickle Cell. Did you know that for someone living with sickle cell disease, their red blood cells in the body turns into something that looks like a banana after about 20 days ?
Colour this cell and ask Mom or Dad to email it to us on info@aussicklecelladvocacy.org for your change to win an ASCA branded mask.
SICKLE CELL CROSSWORD Find all the words on this sickle cell word search to win a surprise gift from us. Email the answers to info@aussicklecelladvocacy.org
Family Corner
Warm Lentil Salad with Asparagus and Goat Cheese
-Form Rodale
Ingredients
3/4 cup green lentils
1 small red onion, chopped
1 carrot, chopped
1 rib celery, chopped
1-pound asparagus, trimmed
2 tablespoons balsamic vinegar
1 teaspoon honey
1/2 teaspoon Dijon mustard
1 tablespoon extra-virgin olive oil
1 tablespoon flaxseed oil
1 large bunch frisee
4 ounces reduced-fat goat cheese, crumbled
Steps:
1. Preheat the oven to 450ºF.
2. Bring 2 cups of water to a boil in a medium saucepan over high heat. Add the lentils, onion, carrot, and celery.
3.Reduce the heat to low, cover, and simmer for 15 to 20 minutes or until the lentils are tender. Drain.
4.Meanwhile, place the asparagus on a baking sheet and coat it on all sides with cooking spray. Tilt the sheet to roll the asparagus to coat it underneath. Roast for 10 to 15 minutes or until tender-crisp and browned. (Time varies depending on the thickness of the asparagus.)
5.Whisk together the vinegar, honey, and mustard in a medium bowl. Whisk in the olive oil and flaxseed oil. Stir in the lentil mixture, tossing to coat.
6. Arrange the frisee on 4 plates. Mound one-quarter of the lentil mixture in the center of each plate. Arrange the asparagus on or around the lentil mixture.
7. Sprinkle each plate with one-quarter of the cheese.
This year we were unable to do our traditional run for the kids event due to the covid-19 pandemic. We are back next year. Hope you can join TeamASCA.
