Archives for category: leukaemia

A generous, dedicated group of people have been working hard to create the story of  Sadako Sasaki in film to support our leukaemia research project.

Sadako survived the Hiroshima bombing in 1945. Radiation can kill quickly by causing radiation sickness, or slowly by causing cancer. Like many other children who survived the bomb, Sadako developed leukaemia ten years later when she was 12.

paper thin - liz's coming shot

The Director Elizabeth Duong and the Paper Thin Productions team is poweful both visually and emotionally. Daniel Hernandez and Elle Graham’s music can stand on its own.

So why Paper Thin? The story ties in with our research into leukaemia, and we’re aiming to raise awareness and support for the research.

This is crowdsourcing with a difference. Researchers worldwide are looking to alternative sources of funding as grant funding gets more and more competitive. Missing out on grant funding is not a short term problem. One very real problem is that skilled Scientists have to leave research.  That means the projects they’re working on stop and discoveries they were after will never happen. The expertise  they’ve build up won’t be used.

The most risky projects are the ones that make the biggest difference, the game-changing discoveries. But granting bodies don’t like risky projects. They like giving money to the big labs – this means more of the same.

Crowdsourcing is gaining in popularity – the people decide for themselves what research projects their donations will help.  In the case if Paper Thin there’s no middle-man crowdsourcing platform (they take a commission).

Another big difference is the product – this is a leukaemia story in film and music.

So because the Paper Thin Productions team’s given their time freely you can be sure 100% of your donation will go to the research.

THANK-YOU TO ALL INVOLVED

The credits do better justice than I could to acknowledge the people who helped. Special thanks also to Jenny Going from the Essendon Symphony Orchestra for allowing us to use their time to rehearse and record the music, and also to Shauna Hurley, Bridget Bible, Richard Prentice, Barabara Cytowicz, Leslea Johnson, Amber Atkinson and Kayanne Allan from St Vincent’s Hospital who helped with the logistics of how to do this from the Hospital’s perspective.

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Carl Sagan was an astronomer and academic, best known for popularising astronomy. He hosted and co-produced the original hugely popular series Cosmos: A Personal Voyage.  Its sequel Cosmos: A Spacetime Odyssey was released this year. Even though I’m a biologist at heart I was fascinated by the original Cosmos.

Sagan was diagnosed with a myelodysplastic syndrome (MDS) and died at the age of 62, in 1996. In interviews near the end of his life he discussed myelodysplasia and said he was hopeful he’d been cured. He died at the Fred Hutchinson Cancer Research Center of pneumonia  after his third bone marrow transplant, a complication of this illness.

Most people with a diagnosis of MDS won’t have heard of it before. MDS is a group of bone marrow diseases. It’s at least as common as or more common than leukaemia but older people have a higher risk – perhaps one in 2,000 over the age of 60. A third of people with MDS will develop leukaemia. The 14th July, 2014, is the Leukaemia Foundation of Australia‘s second National MDS Day . One of the aims of MDS Day is to raise awareness of MDS.

Sagan’s illness was an opportunity to popularise MDS, but look how the cause of his death was described in these TV news reports.

In these news stories he was said to have died from a complication of “a rare blood disorder that led to cancer”, or “a blood disease”, “a bone marrow disease”, and even a” bone cancer” – the name of his disease was avoided.

Myelodysplasia literally means abnormal bone marrow cells. Blood cells are made in the bone marrow. In MDS the immature bone marow cells are abnormal and don’t mature properly. So the blood doesn’t have enough normal blood cells to do its job effectively. The blood is made of a number of different types of cells and the different types of MDS relate to the type of abnormal cell. MDS is often associated with a recognised chromosome abnormality, and identifying these chromosome abnormalities can help with diagnosis, treatment and prognosis. Therapy-related MDS is a specific type of MDS caused by treatment for a previous unrelated cancer and it usually has a poor outcome and very abnormal chromosomes.

MDS research has been neglected but has picked up recently. Some of the recent progress includes work by Carl Walkley and Louise Purton at St Vincent’s Institute in Melbourne, Australia.

MDS has had a history of name changes that seems to have made the meaning of its name less clear, except to medically trained people. This hasn’t helped improve public awareness of MDS. It was first named Di Guglielmo Syndrome in 1923 after its discoverer, then became refractory anaemia, then preleukaemic anaemia, preleukaemic acute human leukaemia, preleukaemia, and finally in 1976 the French-American-British Co-Operative Group of haematologists named it myelodysplastic syndromes. This recognised that it’s a group of related diseases and that not all cases will go on to develop into leukaemia.

Pathologist Ed Uthman, thinks Sagan’s Disease would be a better name for myelodysplastic syndromes – both as a tribute to Carl Sagan and a name that would mean more to most people than myelodysplastic syndromes.  Maybe he has something. Plenty of syndromes and diseases are named after people who studied them. Down Syndrome would have to be the best known example. Have you heard of amyotrophic lateral sclerosis? Motor neurone disease? Lou Gehrig’s disease? The first name is probably a nice technical description of the disease, but I’m guessing you’re more likely to  have an idea of what the disease is from one of the last two names, because they’re used in popular media and are connected in the public eye with famous sufferers – Stephen Hawking and Lou Gehrig. (Ed Uthman also think’s Lou Gehrig’s Disease should be “Hawking’s Disease”.)

I’ll let Carl Sagan have the last words on popular (mis)understanding of science (extract from Wikiquote).

We live in a society absolutely dependent on science and technology and yet have cleverly arranged things so that almost no one understands science and technology. That’s a clear prescription for disaster.

Every kid starts out as a natural-born scientist, and then we beat it out of them. A few trickle through the system with their wonder and enthusiasm for science intact.

(Cross-posted to Fireside Science at SciFund Challenge.)