Leukaemia survivor and Leukaemia & Lymphoma Research supporter Kris Griffin has spent three days at a conference in the Czech Republic speaking to delegates from 60 countries about his experiences.

"I was invited to the Chronic Myeloid Leukaemia (CML) Horizons conference in Prague where I spoke to an audience of 150 patient advocates, nurses and physicians about using social media and being a 'connected' patient.

CML Horizons is a community-run and multi-sponsored conference, which has evolved from the "New Horizons" conferences 2002-2011. It is run by the CML Advocates Network and hosted by the newly established, non-profit, Swiss-based, patient-driven "Leukaemia Patient Advocates Foundation" . The conference demonstrates the great power of the global community: inspiring best practice presentations, materials, marketplace sessions, interactive forums and updates by CML experts from all over the world.

This conference provides patients with much-needed scientific knowledge and advocacy skills and over the years has developed a great collaborative spirit across borders and regions, it is a unique global family and I am proud to be a part of it.

I have been battling chronic myeloid leukaemia (CML) for over five years now and I'm winning the fight, having been declared in remission from the disease. In recent weeks I also spoke at the Leukaemia & Lymphoma Research annual conference.

In the UK there are only 650 of us every year diagnosed with chronic myeloid leukaemia so it is a rarer form of cancer. It's hard to get our voice heard but this disease is a cancer that is being treated more and more successfully with tablets. The potential impact of this on other forms of cancers is great so it's important we network, fund-raise and support the life-saving progress and innovation that is being made every day."

Kris was treated at the Queen Elizabeth Hospital in Birmingham and also works as an advocate and parliamentary lobbyist fighting for other cancer victims to have access to the drugs they need. He is director of marketing and communications at Ormiston Forge Academy in Cradley Heath,  and also has a blog where people can stay up-to-date with his campaign efforts: www.accesscmldrugs.wordpress.com

A unique study sequencing the entire genomes of identical twins with leukaemia has identified the first mutations sparking the disease in the mother’s womb.

The research, largely funded by Leukaemia & Lymphoma Research and conducted at The Institute of Cancer Research, London, has uncovered clues to the origins of childhood leukaemia in two pairs of identical twins.

Scientists believe these early genetic origins of childhood leukaemia could be ideal targets for new cancer drugs, because they represent mutations present in every single cancer cell, playing a major role in the development of the disease.

The study, which also received funding from the Kay Kendall Leukaemia Fund and Cancer Research UK,was published in the major scientific journal PNAS.

Leukaemia is the most common cancer diagnosed in children, affecting a third of young cancer sufferers and killing 100 children a year in the UK. Identical twin children often develop leukaemia at the same time, suggesting a genetic link for their disease.

The Institute of Cancer Research scientists decided to investigate this link by sequencing the entire three billion letter genome of two pairs of identical twins with leukaemia, in order to identify the mutations driving the disease in the womb and after birth.

Co-author of the study, Professor Mel Greaves, Professor of Cell Biology at The Institute of Cancer Research (ICR), said:  “It’s unusual in cancer to be able to identify the mutation that kick starts the whole process. Twin children, uniquely, provide an insight into the silent beginnings of leukaemia. One implication of these new findings is that the first or ‘founder’ mutation might provide an appropriate target for therapy as, unlike all subsequent mutations, it is present in every cancer cell.”

The ICR scientists took genetic samples from two sets of identical twins suffering from acute lymphoblastic leukaemia (ALL), the most common form of leukaemia found in children. They found that a common leukaemia causing gene called ETV6-RUNX1, generated in the womb by the exchange of genetic material between chromosomes, was the only significant mutation shared by two of the twins and therefore must have been the critical ‘initiating’ genetic change leading to their leukaemia.

The two identical twins exhibited a total of 22 mutations which had accumulated after birth, but none of these mutations were shared by both twins, and so were secondary to the disease’s progression.

In the second pair of identical twins, both children were found to have inherited a mutation from their parents called NF1, predisposing them to a condition called neurofibromatosis, which is a major risk factor for leukaemia. Three other chromosome changes were identified in both twins, which the scientists believe occurred in utero from the same single clone of cells.

Co-author, Professor Richard Houlston, Professor of Molecular and Population Genetics at the ICR, said: “From a clinical perspective, it’s very rare that you will get a set of identical twins with lymphoblastic leukaemia, so to be able to sequence the whole genome of two pairs of twins with this disease is an important achievement. This study helps us to better understand how leukaemia develops in utero, and provides us with promising new avenues for treatment.”

Professor Chris Bunce, Research Director at Leukaemia & Lymphoma Research, said; “The research team at the ICR has been at the forefront of studies into leukaemia in twins that have developed a deeper understanding of the types and sequence of events that lead to blood cells becoming cancerous. This study has used state of the art emerging technologies to still further understand how cancer develops. Although the study was performed in young twins, it reveals processes that are relevant to adult leukaemias, which are far more common, and also potentially relevant to other cancers.”

Scientists at the University of Edinburgh have been granted £1 million by Leukaemia & Lymphoma Research to design new approaches to prevent the blood cancer non-Hodgkin lymphoma spreading in patients.

Non-Hodgkin lymphoma appears as a solid tumour most commonly in the lymph nodes of the neck, chest, armpit or groin. Around 950 people are diagnosed in Scotland each year, making it the seventh most common type of cancer. 

Suprisingly, aggressive lymphomas often contain large numbers of dying cancer cells alongside those that are multiplying. The Edinburgh scientists have found that these dying tumour cells release molecules, in tiny bubbles known as ‘microvesicles’, that help stimulate the growth of new cancer cells.

Professor Chris Gregory, who is leading the new four-year study, said: “Dying lymphoma cells actually aid the growth of more cancer cells in a number of different ways. If we can develop drugs that switch the cell-birth and cell-death equation in favour of overall cell death,then we may be able to find a cure for all patients.”  

Dying cancer cells are suspected to re-programme immune cells called phagocytes to actually support the growth of the cancer. Phagocytes are the ‘eating cells’ found around the tumour which are designed to ingest harmful and dying tumour cells.

The researchers will use state-of-the-art  technology to examine this and other biological processes in order to determine exactly how dying tumour cells hijack the body’s immune response to support cancer growth.

Professor Chris Bunce, Research Director at Leukaemia & Lymphoma Research, said: “Current drugs designed to kill tumours have variable success rates, with many patients not responding or relapsing after treatment.
“If drugs can be developed to prevent the dying cells from promoting tumour growth, it will represent a significant step towards achieving a cure for these blood cancers, when used in conjunction with current drugs.”

Leukaemia & Lymphoma Research currently has over £4.2 million invested in eight blood cancer research projects in Edinburgh.