By Dr Christopher Henstridge
WHEN the Autumn Budget was announced by Rishi Sunak in October, it marked a disappointing end to a campaign run by a coalition of people living with Motor Neurone Disease, research scientists and MND charities.
United To End MND was formed to appeal to the Government for an investment of £50 million over five years for targeted MND research. At the end of September representatives delivered a letter signed by hundreds of people living with the disease to 10 Downing Street. This letter described the devastating impact of MND and highlighted inadequate government funding in the field.
MND is a collection of incurable diseases that result in the loss of cells in the brain and spinal cord that control muscles. As these cells breakdown, people lose the ability to use their muscles and subsequently rely on technology to move, speak and breathe. The average life expectancy is between two and five years and it is not as rare as many people believe. The average person has a 1:300 risk of developing MND and around 400 live with the disease in Scotland at any one time. The only approved medication may increase life expectancy by a few months and this is simply not good enough. The only way to improve this bleak prognosis is with greater investment in research and clinical trials. This is why the United to End MND campaign was so important.
The Government’s decision not to increase funding was a blow for everyone affected by MND. However, the months of campaigning and political negotiations had their effect and it was announced in November that the Government had agreed to the £50m investment after all. For researchers, the hard work starts now and it’s a challenge we are ready for and passionate about.
This decision has given hope to people living with the disease that a cure may one day be available. Jude de Vos lost her son Jody to MND when he was just 38. Hearing news of the new funding she told me me: “There have been years upon years of heartbreak but now there may be a shaft of light through a keyhole we never saw before. I really, really hope so, even though it’s too late for my son”.
This month sees the MND Association’s annual conference, which will (virtually) bring together almost 2,000 researchers from all over the world. There will be special presentations by eminent scientists in the field, including a Nobel Prize winner, and important research updates from teams across the globe. There will also be a plenary presentation by Steve Gleason, who was diagnosed with MND in 2011. By talking about his own experience and achievements, he wants to inspire people with MND to not only live but thrive following diagnosis.
My research team from Dundee will be adding our data to the discussions with the hope that soon, someone, somewhere will add the final piece to the puzzle and unlock the breakthrough that everyone is so desperately searching for.
Dr Christopher Henstridge is with the School of Medicine, University of Dundee
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