MMN - Doing more for you
- Chris
- Feb 6
- 4 min read
Inflammatory Neuropathies UK supports around 40 different conditions, and while we try to make sure that we are here for everyone, it can sometimes be difficult to make sure we cover everything as well as we can.
That is why it's important that we have things like Awareness Months, and that people impacted by conditions remind us that we really need to do more.
As February is MMN Awareness Month, it is time to not just shine a light on MMN, but also on ourselves about how we support people impacted by MMN.
MMN (or Multifocal Motor Neuropathy to give the condition its full name) is a perfect example. Data is pretty scarce on MMN, but we estimate that there are probably around 400 people living with MMN in the UK. Now, with about 67 million people in the UK, that really is a tiny amount (about 0.6 of a person per 100,000 people). However, MMN is probably our third most common condition out of those 40 different ones.
As a result, you are probably thinking that we must do loads around MMN. Well actually, if truth be told, we don’t do enough for people impacted by MMN. Yes, we mention the condition all the time. We also have information on our website. People impacted by MMN can also access all of our support and services. But what do we do specifically for MMN?
As we began planning for MMN, I started to think about this. It was also highlighted to us by people with MMN who we spoke to about what we should do in MMN Awareness Month, and by a few people with MMN who I spoke to directly. It’s quite uncomfortable to come to the realisation that you need to do better.
So, we are going to use MMN Awareness Month as a kick up the backside, and there are a key few things we are going to do.
Talk about MMN more
MMN can’t just be a mention. We need to talk about MMN more often, we need to do more features on MMN, tell and promote more stories, and highlight issues in the same way we do for GBS and CIDP. You will already see blogs and stories this month, but watch out for podcasts and features as well. And that’s just the start.
Reach more people with MMN
The numbers of people we have on our database with MMN is ludicrously small. If there are 400 people in the UK with MMN, we don’t know who they are, and they certainly don’t know we exist. If we don’t reach people, then we can’t support them, which means we aren’t doing our job properly. It's time that changed.
Put a focus on MMN (and not just for Awareness Month)
It’s great that we do lots in MMN Awareness Month, but once a year isn’t enough, we need to do better. Over the coming months and years, we will be looking for more features, more stories, more research, and more specific support around MMN.
Make sure that MMN is treated equally to other conditions
Now here’s a thing, we have a monthly Online Get Together for GBS and another for CIDP. But we have nothing for MMN. Well, that is changing this month, with our first call happening on Tuesday 24th February at 7pm. We will also be mirroring our information packs and online information to make sure we are treating MMN equally, and looking to develop specific projects like we have done for other conditions.
Make a promise, that we will do better
This one is on me. I’m making a promise here and now that Inflammatory Neuropathies will do more for people impacted by MMN. And as with everything else, I want you all to keep me to my word.
So, that is all for me and the Charity, but what can you all do? Well, start off by asking about MMN. If you don’t know anything about it, head to our blog or information guide and learn.
Be MMN Aware.
And once you know, share with others and tell people all about MMN. The more people who know about the condition, its impact, and what to look out for the better.
If you are someone who is living with or impacted by MMN, and you aren’t linked into us then get in touch. Get linked into our community and work with us. After all, we are all IN this together.
If you know someone with MMN, then refer them to us. Let them know about our community, what we do, and what we could all do together. The bigger our voice, the greater our impact. We can’t represent people, or amplify voices without knowing what you think.
If you are impacted by MMN, tell us what is important to you, talk to us about issues, the burden of disease, and the burden of treatment. Suggest things we should do. After all we are your charity.
Get involved with the Charity. If you fancy it then volunteer. If you don’t want to make that kind of commitment then get involved at a Local Get Together, or on the new MMN Online Get Together. If you fancy it, then consider fundraising for us so we can carry on supporting more people impacted by MMN.
For anyone out there, I suggest watching ‘No one Rides Alone’, a new film that is being released this month following Clive Phillips (an MMN patient) as he attempts to ride around the 1955 Tour De France route. In it we see how someone with a life altering condition, and who receives ongoing regular treatment, is able to overcome adversities to do something amazing. It’s proper inspirational, and you can find more about the UK tour at https://makingthemostofnow.co.nz/no-one-rides-alone/
So, I promise we will do more around MMN, but to do so, we will need your help and support. If you have MMN, register with the Charity at Membership Registration | Inflammatory Neuropathies UK. Join the MMN Online Get Together by going to Get Togethers | Inflammatory Neuropathies UK, or just get in touch and let's have a chat.
