Today is global MND/ALS awareness day.
This awareness day, Rob Burrow’s family will be in our thoughts and those of many others after he passed way on the 2nd June. Sadly, Rob’s family is not alone as about another 160 families will also suffer heartbreaking loss during the month.
All of us totally understand the value and power of awareness. The continued loss needs to stop. It’s hard to say, but anyone diagnosed today still has a very severe prognosis and bleak outlook. Awareness and research is the only thing that will change this.
In a brutal coincidence, Rob died on the very same date as Lou Gehrig on June 2nd 1941. Lou’s name is synonymous with our disease in the USA, so much so that MND is often referred to as Lou Gehrig’s disease. Similarly, Rob’s name now means the same to the British public. 83 years separate their stories, but both had the same ending.
To the casual observer it can easily be concluded that no progress has been made in understanding and effectively treating our disease. It did indeed take over 50 years, following Lou’s death, for an iota of light to appear, with the discovery of Riluzole in the 1990s. This tiny pill only extends life by a few months. Riluzole remains, however, the only globally approved treatment with time proven efficacy. For now…
However, in the last 10 years awareness has greatly increased. First there was the now infamous Ice Bucket challenge which took global social media by storm in 2014. The challenge gave both a massive cash injection to research across the world and raised awareness to new levels. And then, in the UK, the diagnosis of sporting stars Doddie Weir, Rob Burrow and Stephen Darby, a few years later, sparked awareness and fundraising like never before here, even exceeding the Ice Bucket Challenge.
Our 3 sporting stars took awareness to the mainstream like never before. Straight talking, no-nonsense Rugby Union legend, Doddie Weir, formed his own MND charity foundation with an intent to be a nimble, lean, influential, and decisive organisation with a focus on research funding. The My Name5 Doddie Foundation has brought a sense of urgency to our plight with its ‘sleeves rolled up and never taking inaction as an option’ attitude and is now firmly regarded as a leading MND charity alongside, and complementing, the MND Association. Ex Liverpool footballer, Stephen Darby, also formed his own youthful foundation along with his friend Chris Rimmer, a life long Liverpool supporter. Sadly we have now lost Doddie, Rob and Chris.
Rob Burrow along with his Rugby League championship winning team mate Kevin Sinfield became a huge fundraising behemoth with Kev’s incredible running feats. Rob and his family also put their life on full public display in documentaries, news items, sporting events and interviews. Rob became a face of our disease. His legacy will be both awareness and the new Rob Burrow MND Centre in Leeds.
At the end of last year the new UK MND Research Institute was launched following the successful government campaign for £50m for accelerating MND Research. Rob Burrow and his family were, and still are, strong supporters of the Institute and their relentless awareness helped to bring the vision to fruition.
With the goal of accelerating progress towards meaningful treatments and, ultimately, a cure, the building blocks of the virtual Institute funded by the charities and government investment are now falling into place. Watch out for more news soon on EXPERTS-ALS, a drug screening platform designed to accelerate trials for the most likely drug candidates.
The pace of progress is increasing and just last year the first truly effective (life changing) treatment for one specific genetic version of our disease (SOD1) became available from Biogen. Now, we await the results of a very promising repurposed drug, Interleukin 2, that may have a positive disease changing effect for a more substantial part of our community.
However you choose to support global awareness day, whether it be a cake sale, a physical challenge, raising awareness of research, giving interviews or using social media we wish you success.
Best wishes
We are #United2EndMND
We are United2EndMND - Changing the conversation 