Our visit to the Motor Neurone Disease Association AGM

Last weekend, Jean and I attended the Motor Neurone Disease Association (MNDA) AGM – Annual General Meeting. This post is my account of the event.

The AGM is the once a year meeting of the organisation at which the financial reports are presented. However, that is but a small part of a day and the night before volunteers, people with MND, carers, research staff, MNDA staff, trustees, directors and others gathered together.

The event was comprised of care updates, campaign updates (e.g. Government benefits and disability matters) and a keynote speaker.

In addition to this, there were workshops at which various subjects were discussed with attendees.

I start my report after parking up in a nicely positioned disabled parking spot.

Arriving at the pleasant East Midlands Radisson Blu Hotel, only about 500 metres from the landing flight path, but a noise barely noticeable inside, we checked in and proceeded to our room. As I say, a very nice hotel, not too big, not too small.

Meeting for the welcome meal, great discussions were had, and after enjoying some time in the bar we retired at midnight to be all sharp for the AGM.

First thing in the morning, Jean went to the gym whilst I went alone to breakfast! No readers, Jean was not neglecting me! I was with my rollator, and had a meeting planned regarding my presentation at one of the workshops. I ably removed myself from the fine room, negotiating what can only be defined as a castle thick and weighty bedroom door (note to hotel managers, might be worth slightly loosening the spring!) I then used the lift, which with a rollator involves turning around amongst fellowing travellers, perhaps a wheelie! Always fun!

Once downstairs, I proceeded to breakfast. I was a few mins early for my meeting so I thought I’d get some food.

ALERT! I had forgotten that me carrying a plate of hash browns and beans any distance in a crowd of

Eat as much as you like, post hang over, hotel guests

is not sensible! Fortunately, I had made loads of friends the night before, and was ably assisted. Otherwise it would have sounded a bit odd me asking an attractive lady “Can you help me with a sausage?!”

After breakfast we proceeded to the main hall, where there were many stalls with research, care and other exhibits. This company, particularly caught my eye. A group of dedicated retired engineers who build custom aids for disabled people. Thank you for such a commitment.

After the welcome sessions and updates on care the conference split up for the workshops.

Jean and I attended a session about awareness raising. For some time I have been discussing approaches and strategies for raising awareness with the MNDA, and they kindly invited me to present, as a person who is living with MND, regarding my perspective on awareness raising. I used to present in my day job all the time, so it didn’t scare me. However, back then I used to be able walk around and had more than the sexy husky and weak voice that I now do! To help me, I agreed a set of signals with the facilitators on handling questions, and to help me make comments.

I shouldn’t have worried. I really enjoyed it, and the old skills still remain. I did it half standing and half sitting. Thank you to Chris James and Colin Morris of the MNDA  for making notes as well!

Here is one of my slides to give you a feel for the session. It was designed to be provocative, and because I have MND, I can pretty much get away with anything!

It was a great debate and I look forward to working with the MNDA and the wider MND community building on the current solid awareness foundation for as long as I am able. Thank you to all the attendees and their contributions.

There was no doubt that in the audience on the day there was a real desire for much bolder campaigns. Awareness is complicated and has to be strategically managed. The last thing we need to happen is to affect existing donations and volunteering.

To give you insight into just one subject we discussed, that of the amazing Stephen Hawking. He is a superstar, no……… hyperstar, and a patron of the MNDA. However, he is an extremely exceptional case of MND, still alive 50 years after diagnosis! Infact I don’t believe anyone, anywhere in the world, has lived that long with MND. He is actually truly unique. To give you a feel for how special he is consider this. In the time he has been diagnosed (50 years) over 100,000 people in just the UK alone have been diagnosed with MND and then died with a typical survival time of 2.5 years! This paradox has long been discussed within and outside of the organisation.

Undoubtably Stephen is a massive figurehead for the MNDA, but does his image reinforce a false image of the destruction of MND in a typical person living with the disease? Discuss!!

We came up with some interesting ideas!

After the workshop, it was time for food. I was lucky enough to have lunch with Professor Ammar Al-Chalabi and we had a great discussion.

Following the nosh, we returned to the hall for the financial section of the AGM and finally Ammar’s keynote speech on MND Research, aptly titled…

Are we really making Progress?

You can watch the full presentation below (courtesy of the MNDA Facebook site), and it is well worth it! The answer is yes, and in his own words

“We are now running towards the target, and soon we will be sprinting”

Ammar gave, as ever, a gripping, highly detailed but clear presentation.

Ammar discussed the risk of developing MND and he used the lifetime risk of 1/300. As you know I believe this statistic is far more powerful than the incidence statistics. It specifically helps to square that circle when you consider there are only 5000 people living with MND at any one time but why does everyone appear to know someone who has had/has the disease!? Because of the severe prognosis, this disease, for which you have a higher chance of getting than say MS, appears much rarer than it actually is. However, if an effective treatment is discovered, the numbers living would rise staggeringly over 10 years. And bingo, there is the market for a drug!

There are some benefits to being classed as a rare disease and that is the Orphan drug advantages. “What are these Lee?” In Europe, a rare disease is defined as a condition that affects less than 5 per 10, 000 inhabitants, and is fatal or severely debilitating. So in the UK that is less than 30,000 people at any one time. So clearly MND is rare on this definition. The Orphan drug act/legislation, in Europe, and the UK, grants pharmaceuticals and biotech companies important financial incentives to develop drugs for rare diseases.

However, when we talk about statistics for awareness and education we should always use the lifetime risk. The disease is still classed as rare, because of the prevalence (ie people living with the disease, is below 30,000 in the UK) so there is no risk to the orphan drug benefits. Of course, once a drug is found, the disease will not be officially rare!

The moral of my ramblings is..

The use of language is vital when raising awareness of Motor Neurone Disease (MND). And it may differ to language used in research and day to day care of those living with the disease.

Back soon readers! Sooner than you think……