Bringing hope to MND patients – the changing status of research and how threshold funding will make a difference

Back in 2014, the now legendary Ice Bucket Challenge spread around the globe raising significant funds for the MND/ALS cause. In the UK alone about £7m was donated by our very generous public in just 2 short weeks during the warm summer weather.

Following a straw poll by the MND Association, soon after this global phenomenon, most of the cash would be ear-marked for vital MND research.

By sheer coincidence, 2014 was the year of my diagnosis and it really felt like the stars might be aligning. I had this very disease that millions of people were dumping bitterly cold ice over their heads in a once in a lifetime viral event! Was this the start of real hope for a disease that has such a reputation for it’s sheer brutal progression and prognosis?

To put the event into perspective…

The singular boost to MND research funding was equivalent to more than the UK government puts in the research pot yearly, and ratched the MND research community up a notch.

What was the actual impact and size of this ‘notching’ up?

Aside from effectively adding more than the equivalent of one year’s UK Government contribution, I liken it to running or, perhaps, buying your first house.

You scrimp and save, work relentlessly and then make a long term commitment. Once on the the train of life, working every hour to maintain your lifestyle, daily living becomes a balancing act. Any funding emergency, such as a major repair bill, meant going without, elsewhere. Perhaps holidays are off the agenda for a while? You might even have to turn the lights off, heat the house less.

But then you receive that pay rise, a promotion, or a windfall. Suddenly you can repair the car, starting saving for that holiday.

The very same is true of MND research. There are lots of moving components and infrastructure, some of which may be (or were!) on life support, or perhaps on ice, waiting for more funds.

This is what I call threshold funding. Once a certain level is reached, things start to happen. The lights go back on and progress happens.

This definitely was the result in 2014 and for several years after. MND research kept the lights on and, more importantly, drug targets and opportunities were identified, just waiting to be exploited. I have heard leading researchers remarking that the quest for bringing an end to our disease leapt forward over 5 years with this one funding boost.

All this with just under £7m! To put into magnitude context, the UK government has just announced £30m for tennis courts refurbishment!

In 2021, after another global viral event, of a different kind, the ice bucket funds have all been allocated and used, and MND research funding is now again on a knife-edge. Unlike some diseases, we have been just below that threshold for most of the time in our research history.

Our £50m bid over the next 5 years would enable the threshold to be breached once again and much much more.

Finally, I have been fortunate to have survived 7 years, in which time about 14,000 have died and a similar number diagnosed.

Let’s make the next 7 years fruitful and finally bring that real hope. Changing the conversation from….

Go home and get your affairs in order

to

Yes, you have MND and we are running a trial and I can get you on it next week.

We need to break through the threshold with MND targeted funding to have any chance of accelerating research by encouraging the UK government to increase their contribution from the insufficient £5m annually.

Lee – patientsunited2endmnd.org