Posted by: mads04 | August 30, 2015

Mime for Mnd part 3 

The mime for MND campaign was brilliant and for me it was a huge success. To see people involved with and living with MND have such a laugh was brilliant to see. There’s not much to smile about in the world of MND. That’s a fact.  My whole intension was to get people with MND to smile and enjoy the videos, which they did so it was job done for me. 

For those of you who asked me why the MND association never got involved with Mime I’ll try and explain their reasons,  Firstly, I was told by Chris James who works for the association that Mime for MND was a brilliant idea but the association can’t back it because people might get confused with their own silence speaks and last summer campaigns. Seriously, does he think that people who raise awareness for MND are fuckin thick? That they can’t figure out the difference between the campaigns?. I emailed him back asking them to reconsider, as I and others living with MND felt it was a great way to raise funds and awareness using music and laughter. Then he gets back to me claiming they can’t get involved because of copyright, he was scared of being sued by musicians whose song they might use. Ok, fair enough I thought. I told him they can use one of our songs or someone who’s recorded a song for MND. He never answered this. 

I found his comments strange to say the least but it’s not the first time he’s talked through his arse to me. The truth is they never wanted to get involved and seen mime as competition to their own campaigns. I told them the minute we start competing with campaigns were doing it wrong. it’s not like were flooded with money and awareness raising ideas now is it? I couldn’t believe they would react like this but it didn’t really surprise me. I found a lot out about some people involved with MND during June. That some of them are yes men and terrified to rock the boat a bit. Let’s have one thing right if you’re living with MND or caring for a loved one, you don’t want someone who’s scared to speak up for you in your corner do you? I tried to be as diplomatic as I could but the final straw for me was when they completely ignored the kids who filmed there own mimes, including my own 9 year old son. That to me was just taking the piss, we are meant to be encouraging kids to get involved with MND and try an educate a younger generation, not ignore them. 

I’ve nothing in common with the hierarchy of the association, I’ve said for a while now they are snobs who are stuck up their own arses. The emails I’ve had with Sally Light who’s the chief executive of the association just confirmed my opinion of them. She had more excuses than a pregnant nun for not getting involved. Of all the illnesses in the world trust me to get one that’s ran by snobs!! I would never try and discourage anyone from raising money for the association, far from it. They have good people who work for them but they are restricted by the association’s out of date policies. 

They are doing a new campaign starting 1 September #Tea4MND you can find out how to get involved here http://www.mndassociation.org 

Also a mate of mine from football is doing tough mudder for MND you can sponsor and read why he’s doing it here http://t.co/J4czKlMmY8 thanks Paul appreciate your support mate 

I’ve also seen people who work for them who’ve attended MND events and not lifted a finger all day, whilst MND volunteers ran round like headless chickens trying their best to please everyone. Money for old rope comes to mind.  

I was told by Sally that they won’t promote my blogs( they defo won’t promote this one!) because I swear in them!  Living with a terminal illness believe it or not does make you swear, I’ll guarantee that if the Queen got MND she’d be screaming “Fook ooof MND” when her hands won’t work and she can’t wipe her own arse whilst sitting on the throne!!  I wouldn’t wish this shit on anyone by the way. I also swear because I’m trying to relate to a younger audience who believe it or not swear to! I’ve worked with enough youngsters to know that if you speak normal day to day talk, they listen better than trying to talk politically correct to them. The youth of today are the cure for MND. 

MND doesn’t discriminate so why do the mnd association? It doesn’t matter if you’re black,white, pink or blue. Old or young, man or woman, straight or gay. MND doesn’t give a shit what you are. The one thing I’ve noticed is that people are being diagnosed with MND younger and younger, I don’t know the reason for this but it’s heartbreaking to see. We cannot live in the past and expect to see results. The association needs to come out of the 1950’s and move with the times. I’ve had world champion boxers and ex UFC mixed martial arts fighters pose with me for pictures with mnda t shirts. They have supported the cause regularly and are amongst the most genuine men I’ve met but because some snobs see boxing and MMA as a contact sport and even though there is no scientific evidence linking MND to boxing or MMA they refused to promote there support. The boxing and MMA audience is huge and refusing to get involved because of out of date views shows how small minded the association are. They promoted a football campaign yet there’s more ex footballers diagnosed with MND around the world than boxers or mixed martial artists, so how does that logic work? again discrimination at its worst. 

It’s 2015 now. Raising awareness for MND is tough enough with putting restrictions on it. 

I’m still trying to get my book finished, so hopefully I’ll get it finished soon. 

Thanks for your support and please keep supporting MND awareness. Everyday someone’s life is ruined by this horrible illness. 

Keep smiling and swearing!! 

To be continued 

Mark 

Ps I’m not on Twitter anymore so I can’t read any messages I might’ve had over the last 2 months, but I know people have been asking over me. Thanks to all those concerned I’m absolutely fine and fuckin dandy!!! 

   
 

Advertisements

Responses

  1. Missing your humour on Twitter very much. Hope all the family are well. I’ll keep smiling and swearing in your honour 😄

  2. Hi Mark, been checking in with Jayne to see you’re okay. Great to hear from you!! Keep going & keep your head held high. Best wishes to you & your family always.
    Great news about the book, keep me updated. I’ll definitely have a copy. Take care xxx

  3. It is so true this disease does make you swear sometimes in my head and even more often out loud using my predictable app. I even have a topic specifically for swear words. Look forward to reading your book. Take care and keep up the good work.

  4. You causing trouble!!!! No never!!!! Glad to read ur still the same trouble causing, swearing, lovable you. Love to u and the family x cant wait to read the book xx

  5. I’ve read a lot of your blog mate, the “career criminal” has stolen your muscles…but your spirit is way more impressive than anyone’s physique. Roll on the book!!

  6. Who cares about politically correct with such a horrible disease. You got the fight in you! Can’t wait for the book. Miss you on twitter.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

Categories

%d bloggers like this: