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Strap on your runners to support Australians with blood cancer as Blackmores Sydney Running Festival goes virtual

Strap on your runners to support Australians with blood cancer as Blackmores Sydney Running Festival goes virtual

Monday September 14, 2020

The Leukaemia Foundation will once again be headline charity partner for this year’s Blackmores Sydney Running Festival as the iconic event is reimagined as an entirely virtual festival for the first time.

While runners usually come together every September for a rare opportunity to run across the iconic Sydney Harbour Bridge and finish at the Sydney Opera House, postponement of this year’s physical event means those hoping to participate instead have the chance to run their own race wherever they are and whenever they wish, and even to race against themselves.

The virtual Blackmores Sydney Running Festival launches September 20 and runs until November 8, giving participants seven weeks to compete in their chosen event as many times as they like. Participants can use the festival’s official training guides to help them achieve their best time and record their results with the help of an app or their own fitness tracking device – all from the safety of their own home or local area.

Leukaemia Foundation Acting CEO Alex Struthers said this year’s festival gave everyone a unique opportunity to strap on their running shoes wherever they are while supporting families affected by blood cancer, including people living interstate, regionally and rurally who wouldn’t usually be able to participate in a Sydney-based event.

“We know regional blood cancer patients aren’t receiving the crucial diagnostics and specialist care they need when they need it and are more likely to face barriers in getting this care, and the Leukaemia Foundation is focused on breaking down these barriers,” she said.

“So it’s especially fitting that we are a proud headline charity for a festival that has this year transformed into a great opportunity for more Australians to participate, regardless of where they live, without travelling to Sydney and while staying safe in the current climate.

“By signing up for the Blackmores Sydney Running Festival and running for the Leukaemia Foundation, you are making sure that every Australian facing blood cancer will have someone to turn to every step of the way to access the right information, the best treatment and supportive care, no matter where they are.”

The number of Australians diagnosed with a blood cancer has jumped 38% in the past decade alone. Today, more than 17,300 people are expected to be diagnosed with the disease this year and sadly, more than 5600 Australians will lose their life, an increase of 27% on 2010[1].

Projections show that while 110,000 Australians are living with blood cancer today, that number will more than double to 275,000 by 2035. Blood cancer is also expected to claim the lives of 186,000 Australians in this time[2].

“Blood cancer is one of the most common, costly and fatal cancers in Australia. There are no screening programs available for blood cancers, and there is no way to prevent blood cancer through lifestyle change,” Ms Struthers said.

“As we strive to help all Australian families affected by blood cancer, we are excited to again partner with the Blackmores Sydney Running Festival – a partnership which will help meet the growing demand on vital patient services in the post-COVID-19 environment and help us reach our goal to see zero lives lost to blood cancer by 2035.

“Staying active and connected has never been as important as right now, so whether you’re a walker, casual runner or ready for some competition running there’s a virtual event for you, and that means there’s an opportunity to play your part in raising essential funds to help save lives.”

The Blackmores Sydney Running Festival was first held in 2000 using the Marathon route of the Sydney Olympics. Since then, thousands of participants have walked, jogged or run in the steps of those Olympians in their own quest for fun and fitness, and funds for charities. While the route may have changed for this year’s virtual event, the festival continues to cater for all fitness levels with options to take part in a full or half marathon, a 10km run or the family friendly 3.5km fun run.

Find out more information about this year’s virtual event at https://sydneyrunningfestival.com.au/. To register to run virtually to raise funds for the Leukaemia Foundation, go to https://fundraise.leukaemia.org.au/register/blackmores-sydney-running-festival

[1] https://www.aihw.gov.au/reports/cancer/cancer-data-in-australia/contents/summary

[2] https://www.leukaemia.org.au/how-we-can-help/advocacy-and-policy/state-of-the-nation-my-life-counts/state-of-thenation-download/

– ENDS –

Thank you for being there when it matters most

Thank you for being there when it matters most

Having lived through her own diagnosis of acute promyelocytic leukaemia (APML), the Leukaemia Foundation’s new Chairman, Dr Carrie Hillyard, has a special thank you message to our generous supporters around the country.

Chair of the Leukaemia Foundation, Dr Carrie Hillyard
Leukaemia Foundation Chair Dr Carrie Hillyard is thankful for the generosity of supporters

“We’ve all heard a lot of the same words this year: “challenging”, “unprecedented”, “pivot”.

In fact, you may know from experience that these very words sum up the blood cancer experience on any given day.

From the moment that diagnosis is pronounced, life certainly takes an “unprecedented” turn into the unknown. Family plans are forced to pivot day-to-day.

With all that Australia has faced this year, it’s meant so much that you are standing up and offering your support and kindness, particularly when families facing blood cancer are feeling even more vulnerable.

Even during bushfires and a global pandemic, blood cancer doesn’t stop, so neither can we.

Like you, I’ve observed the Leukaemia Foundation’s dedication to service for many years now and am privileged to now step into the Chairman role.

I feel deeply proud to succeed the long-standing and well-loved Chairman, Beverley Mirolo OAM, as we continue towards a bold new goal of zero lives lost to blood cancer by 2035.

Such a lofty ambition wouldn’t be possible without your generous support  and I’m grateful for your continued help in conquering blood cancer.” ”

– Dr Carrie Hillyard  AM
Leukaemia Foundation Board Chairman

Davina’s selfless generosity could spark research breakthrough

Davina’s selfless generosity could spark research breakthrough

Before tragically losing her life to incurable blood cancer in 2018, Davina Sickerdick made a lasting commitment to others facing this devastating disease.

Davina Sickerdick standing outside Buckingham Palace in London
Davina Sickerdick pictured in London

Davina was diagnosed with myeloma after persistent back pain raised concern with her GP.

Myeloma, also known as multiple myeloma, affects more than 140,000 people worldwide each year – last year more than 2,000 Australians were diagnosed.

Davina’s partner of 22 years, John, remembers the relentless radiation, chemotherapy and stem cell harvesting that followed her diagnosis.

“There was never really a break with it,” said John. “When you have myeloma you are permanently on chemotherapy, meaning hospital visits every month and blood tests at least twice a week.

“She really had a terrible time with it, various complications along the way and she was allergic to some of the drugs.”

With her health getting worse and faced with the reality she may not survive, Davina decided she wanted to help others.

“Davina was that sort of person,” remembers John.

“She couldn’t do enough for anyone, and nothing was too much trouble.”

Davina always considered herself to be an ordinary person but her family and friends thought of her as extraordinary, full of life, colourful and loved anything that had a little “sparkle”.

“She was the one who took the initiative and contacted the Leukaemia Foundation to discuss the process [of leaving a Gift in Will].

“They armed us with the correct wording and made sure we were well supported to make our wishes clear and formalised.

“My Will reflects the same thing as Davina’s – I will be directing money towards helping more people battling blood cancer through the work of the Leukaemia Foundation.”

Professor Andrew Zannettino will work to eliminate the disease with Davina’s kind gift

Davina’s kind gift has funded strategic research projects looking to better understand myeloma and why so many patients relapse after initial treatment.

With Davina’s gift, Professor Andrew Zannettino from the University of Adelaide has embarked on a three-year study to target certain cells which could eliminate this disease.

“The impact of this gift cannot be underestimated,” said Professor Zannettino.

“Davina’s generosity means we can look for new ways of beating blood cancer and hopefully ensure no one else has to experience the same struggle.”

John is looking forward to seeing real outcomes for families battling blood cancer and encourages others to consider updating their Will.

“I just hope more research can be done, and not just in myeloma, I know there are many other blood cancers needing the same type of support,” said John.

“I feel very proud and happy to think that her gift could spark a real breakthrough, we always spoke about making a difference with our estates and I hope this can make a really positive change for society.”

More than 50% of Australians over 18 don’t have a Will in place (Moneymag, Feb, 2019). Make 2020 your year to double check your Will is sorted and consider leaving a lasting impact for people living with blood cancer. If you would like to know more about leaving a gift to the Leukaemia Foundation, please contact Emma Quigley, Gifts in Wills Officer on 1800 620 420 or email GiftinWill@leukaemia.org.au.

Talk to Emma now

You’re investing in the researchers of tomorrow, today

You’re investing in the researchers of tomorrow, today

Thanks to our supporters, Dr Khai Li Chai was recently awarded a Leukaemia Foundation PhD Scholarship, through the Haematology Society of Australia and New Zealand (HSANZ).

Dr Chai is a specialist clinical and laboratory haematologist at Monash University undertaking vital research into blood cancer.

Your generosity will support Dr Chai over the next three years to investigate people living with a range of blood cancers: chronic lymphocytic leukaemia (CLL), non-Hodgkin’s lymphoma (NHL), multiple myeloma, and individuals who have undergone stem cell transplants.

Khai Li Chai
Dr Khai Li Chai

Her research will focus on hypogammaglobulinemia – a condition where the body does not produce enough antibodies and is linked with serious infections. Sadly, it is a major cause of mortality and illness in affected patients.

Her work will explore antibody therapy to prevent and treat infections in patients, to ultimately lead to a better standard of care.

You can read more about her project and the other bright young minds our supporters are helping here.

Light the Night in your own special way this year

Light the Night in your own special way this year

Those of you who’ve been part of Light the Night over the years, know what an incredible experience it is.  The connection with others.  Shared lived experiences.  United in hope.  It takes your breath away.

A family holding Light the Night lanterns, gathered in their backyard at night
Light the Night in your own special way this year

In a year like no other, Australia’s most beautiful blood cancer community event has been thoughtfully re-imagined to allow us to come together in a new and wonderful way.

This year, you are invited to shine a light on blood cancer in your own special way by hosting a twilight gathering with your loved ones on Saturday, 10 October.

How you choose to Light the Night is limited only by your imagination. A family dinner party, a sunset barbeque with close friends…a twilight picnic in the backyard? It’s up to you!

As darkness falls – you will be part of the official lantern lighting ceremony that will take place in thousands of homes across Australia at the same moment via video stream.

Light your lantern…

Illustration of a white lanternIn honour of your own blood cancer journey

Illustration of a yellow lantern

In memory of a loved one lost

Illustration of a blue lantern

In support of those affected by blood cancer

Be part of this very special Light the Night.  Sign up to host a Light the night for your loved ones at lightthenight.org.au.

Heartfelt thanks to Bridgestone Australia for their 12th year as Light the Night Principal Partner, unwaveringly supporting Australians with blood cancer for over 34 years.

You’re a part of the blood cancer revolution!

You’re a part of the blood cancer revolution!

Our supporters are driving something truly significant this September – a once-in-a-generation opportunity to reduce the impact of blood cancer.

Deb Sims sitting with her three young children.
Deborah Sims, Blood Cancer Taskforce member (pictured with her three children). Deb was diagnosed with chronic lymphocytic leukaemia (CLL) in 2011, aged 38.

Many people know blood cancer is one of this country’s most common, costly and fatal cancers. It can affect anyone, at any stage of life – often with no warning signs.

Sadly, for children and teenagers, blood cancer is still the most commonly diagnosed cancer.

Last year’s State of the Nation report was the first of its kind, looking at the factors influencing survival and quality of life for Australians with blood cancer.

What this report found is very concerning.

In short, there are many obstacles standing between people with blood cancer and the treatment that’s best for them. Whether it’s where they live, if they’re being advised about clinical trials, or simply if they have enough money to pay for the right treatment.

Thankfully, this September in Blood Cancer Awareness Month, your support can help enable a new plan.

Australia’s first-ever National Strategic Action Plan for Blood Cancer is a blueprint for change, tackling the tough issues facing people affected by these diseases.

It re-imagines the way treatment and care of blood cancer patients is delivered across our country.

The plan recommends change right through the blood cancer experience. From the moment a person is diagnosed, through their treatment and recovery and adjustment to life beyond treatment – wherever they live in Australia and whatever their background.

It also looks at the challenges many people face – including those living in regional or remote areas, Aboriginal and Torres Strait Islander communities, and people with diverse and varied cultural and ethnic backgrounds.

This plan was led by our Blood Cancer Taskforce, Australia’s best and brightest blood cancer experts – and our generous supporters helped make it happen!

The Taskforce is a joint initiative between the Leukaemia Foundation and the Federal Government, made up of Australia’s leading haematologists, blood cancer researchers, industry experts and Australians diagnosed with blood cancer. They combined their brainpower, experience and determination to develop a vital pathway to change.

Achieving best practice; Empower patients and families; enable access to novel and specialised therapies; accelerate research
The Taskforce has real progress in their sights

This September, you can progress the fight to conquer blood cancer. Find out how you can help people with blood cancer get the treatments they need.

“Being part of the Taskforce is an incredible honour as I know first-hand how urgent it is for this country to improve treatment approaches to blood cancer. I moved to the UK for an experimental drug I needed to survive. In a cruel irony, a drug that was originally developed in Melbourne. Clinical trials offer more than hope for the future in some cases they literally offer life.

Thank you to everyone who is standing with us against this devastating disease – you are giving people living with blood cancer a better tomorrow.”

– Deborah Sims, Blood Cancer Taskforce member (pictured at the top of this article)

How your support is inspiring others to give

How your support is inspiring others to give!

When the generosity of Leukaemia Foundation supporters helped provide emergency accommodation and the trusted support of Blood Cancer Support Coordinators to the Hughes family, they wanted to find a special way to say thank you.

Courtney and Kate in Courtney's hospital room during treatment
Sisters Courtney and Kate Hughes. Kate was Courtney’s donor for her stem cell transplant.

Sisters Courtney, Kate and Anneliese were so grateful for the kindness of supporters that they were inspired to give back to the blood cancer community. They wanted to help others feel as supported as they do, while 30-year-old Courtney is undergoing blood cancer treatment.

Knowing first-hand just how valuable this personalised support is for families like theirs, all three sisters recently took part in Dry July to fund more Blood Cancer Support Coordinators across the country.

“The Leukaemia Foundation are the angels that softened the blow for me. We didn’t know what we were in for and the help we have been given is amazing.”

Dry July logo“Not only have they been there for me throughout this experience, they have supported my amazing sister Kate too, who has been my stem cell donor,” explains Courtney.

“Dry July has been a positive way for us to give other families facing blood cancer the support we know makes such a difference.”

The Leukaemia Foundation is proud to be a major beneficiary of the Dry July campaign. Thank you Dry July Foundation – and dry Aussies like the Hughes sisters – for funding our Australia-wide network of Blood Cancer Support Coordinators.

You’re Caring for Carers

You’re Caring for Carers

Being a carer for a loved one who has a blood cancer can be rewarding, stressful, overwhelming and isolating.

Two hands holding a small red heart ornament

Across Australia, more than two million people regularly care for a spouse, partner, brother, sister, parent, friend or child. Their care and support vary, from a couple of hours a day or week, to around the clock.

With the help of our kind supporters, the Leukaemia Foundation has developed an e-learning course, Caring for the Carer to meet the needs of those in this important role. Blood Cancer Support Coordinators have designed and this program especially for carers of people living with a blood cancer.

Not only will completing this online course help carers to recognise and support their emotional and practical needs, it also provides access to all the services, support and guidance that is available to them.

You can explore our Caring for the Carer course here.

Survivor Eleanor proving a gift in Will is ageless

Survivor Eleanor proving a gift in Will is ageless

Before undergoing her life-saving transplant at just 23-years-old, Eleanor Colla made a lasting commitment to the blood cancer community through her gift in Will.

Eleanor Colla with the Thai medical team who cared for her through her diagnosis
Eleanor Colla with the Thai medical team who cared for her through her diagnosis

Eleanor was diagnosed with an aggressive leukaemia in September 2012 while travelling through South East Asia.

“I was travelling through Nepal and thought I had food poisoning,” said the now 30-year-old.

“After a week of sickness, I went to a travel clinic and the first question they asked me was if I had travel insurance – luckily, I did.

“They did a blood test thinking it was typhoid but instead picked up that I had no white blood cell count.

“My first thought was ‘my blood is red why would I need any white cells?’”

Eleanor was medically transferred to a hospital in Thailand and after a week she was diagnosed with leukaemia.

Eleanor Colla with her family at Light the Night in Melbourne, 2014
Eleanor Colla with her family at Light the Night in Melbourne, 2014

“I spent 10 days in Thailand and all I ever saw was the hospital,” said Eleanor.

“My leukaemia was actually found cellularly and hadn’t even spread beyond the bone marrow when I was diagnosed so it was very early days.

“I don’t believe it would’ve been picked up if I was back home in my normal environment, just working and going to uni.”

Eleanor and her mother, who had flown to Thailand, returned immediately to Melbourne.

“The Thai hospital sent all my documentation and it was confirmed that I had acute myeloid leukaemia (AML),” remembered Eleanor.

“I started treatment on the 20th September 2012 with my first round of induction chemotherapy.

“It was at the hospital that I first met the Leukaemia Foundation staff who offered up a range of services.

“It was great to be connected with that blood cancer community and my family accessed practical support in the way of petrol and shopping vouchers which was really helpful.”

After her second round of chemotherapy it was confirmed that Eleanor had a gene mutation on her leukaemia cells called FLT3 and she would need a transplant.

Between 20 and 30 percent of people with AML have this mutation. The FLT3 gene codes for a protein called FLT3 that helps white blood cells grow. A mutation in this gene encourages the growth of too many abnormal leukemia cells.

“Essentially, my bone marrow didn’t do anything wrong,” explained Eleanor. “It’s just programmed to create cancerous cells, so it was a bit of bad luck.

“I was told 50% of people don’t survive the first 30 days after transplant but I 100% wouldn’t have survived without it – I figured I was doubling my chances.”

Before her transplant Eleanor hosted a ‘transplant party’ with friends and family.

“I signed my Will at that party, one of my aunts worked in legal assistance and had brought the document over,” said Eleanor.

“It was highly recommended to have a Will prior to the transplant.

“It’s very practical thing to do and I’m a very practical person.”

“I think my mother suggested leaving a gift to the Leukaemia Foundation and that seemed very natural to me.

Eleanor Colla with her German bone marrow donor
Eleanor with her German bone marrow donor

“I very much liked the idea of supporting a blood cancer charity and if I didn’t make it, hopefully my gift would mean someone else would.

“The process wasn’t onerous; both my parents have wills and knew people who could sort it out for me.”

Eleanor is aware that she is not what many people a consider a typical gift in Will supporter, but she would encourage more younger people like herself to consider the option.

“I think it’s quite intimidating for younger people as it’s often pitched as this scary legal thing with unfamiliar language,” she said.

“I’d encourage people to just have the conversation, to get the trusted information and a checklist together which is available through the Leukaemia Foundation.

“A number of my friends have now got their Wills in order because of what I have gone through, but it shouldn’t have to come to that.”

Eleanor received her bone marrow transplant from a German unrelated matched donor in February 2013.

“After the required two years we were able to connect and have since met up twice which was really nice,” said Eleanor.

“There was never any doubt in my mind that we would meet, and I actually started learning German.”

While the transplant was tough, Eleanor bounced back quickly returning gradually to everyday life with a few lasting side-effects.

“I’ve had a bit of graft-versus-host-disease (GVHD),’ explained Eleanor. ‘This presents as tendonitis in the hips so sometimes walking can be difficult. I also get bad nausea and need to keep an eye on my low platelets.

“The first two years it was every day but now it’s maybe once or twice a week so very manageable.

“I still have annual check-ups and can easily contact my medical team if I ever need to.”

After her transplant, Eleanor resumed university and obtained a postgraduate degree, in Information Management.

She is now working as a tertiary librarian in New South Wales.

Eleanor Colla with her father at the Peter Mac Conquer Cancer Ride
Eleanor with her father at the Conquer Cancer Ride in 2018

“I really love my profession and feel very proud that after everything I have been able to re-enter society and regain my independence.”

Eleanor feels contented that her wishes have been made clear through her Will and that the Leukaemia Foundation will be able to support people living with blood cancer well into the future.

“I haven’t stipulated in my Will that the funds should be used for anything specific but just leave it up to the Leukaemia Foundation to disperse as needed,” said Eleanor.

“What organisations actually need is continuous ongoing support not just a one-off dump of money.”

Eleanor and her parents have participated in supporter seminars, receiving information and updates about the impact of their support from Leukaemia Foundation staff and leading researchers.

“As my work is research adjacent, I have a real interest in how the Leukaemia Foundation manages priorities there,” said Eleanor.

“The sessions were really informative, and it feels good to have that active engagement with an organisation which you know first-hand can make a real difference in people’s lives.”

Eleanor is now firmly focused on the future, enjoying her ‘dream job’ while continuing to manage the long-term effects of her treatment.

“I feel very lucky to have the opportunity to do something I love every day and know that is down to the many wonderful medical staff, researchers and organisations like the Leukaemia Foundation who supported me through my blood cancer experience,” said Eleanor.

“I am really proud that my gift will allow that same sort of support to continue well into the future.”

Leave a Gift in Will

If you would like to know more about leaving a gift in your Will, or if you have questions about the process, please don’t hesitate to contact Gift in Will Officer, Emma Quigley on 07 3318 4459 or at equigley@leukaemia.org.au.

Please seek professional legal advice before making or amending your Will.

Thank you for keeping Jamie safe

Thank you for keeping Jamie safe

It has been a tough year for three-year-old Jamie and his family, but the caring support of donors through the Leukaemia Foundation’s Emergency Tax Appeal has made all the difference.

Jamie was only two when he was diagnosed with blood cancer, forcing his family to relocate from their hometown for life-saving treatment in the city.

Smiling young child pushes a teddy bear in a toy truck
Jamie enjoying time with teddy at the Leukaemia Foundation apartment

His family have been overwhelmed by the heartfelt care of Leukaemia Foundation supporters. This generosity has given Jamie’s family a safe and clean place to call home at Leukaemia Foundation accommodation during such an uncertain time.

Nearly one year on, Jamie and his family are still living at their home-away-from-home, a welcoming place near hospital that mum Nicky is so very grateful to supporters for.

“COVID-19 has added even more stress to our lives. Having this safe place to stay has been a Godsend – your help has meant the world.”

As Jamie enters his maintenance treatment phase, Nicky looks forward to the day she can finally bring her little boy back home. The day Jamie will be reunited with his beloved pet lamb Coco on the farm. Ordinary life back on the farm with a busy three-year-old begins again soon, all thanks to the incredible support of donors and fundraisers.