View Full Version : Our Agenda for the MNDA AGM

20th April 2011, 22:42
Hi All,

At the invitation of the MNDA, this thread is for issues to be raised by members at the said AGM.

Item: VAT Exemption awareness
To make suppliers and members aware of this law and to make plans for compliance by suppliers.

Best wishes


21st April 2011, 12:02
Hi all,

When my mum was diagnosed in September 2010 one of the first things I remember seeing on the MNDA website was the following statement:

In 2009, the MND Association unveiled a six-year plan setting out how we will move towards our vision of a world free of MND.


My question would be:

2 years into this strategic objective do they feel their framework will meet this bold statement? As in: are they on target to see a world free of MND by 2015.

I'm probably taking this statement at face value, as there is more to the framework than finding a cure or viable treatment in this time frame, but it would be good to hear a "non politician" answer. As I have learned over the last few months everything moves at glacial speed when it comes to drug trials and finding pieces of the MND puzzle, so this feels to me, very ambitious. Yes progress is being made from what we hear on the web and in all the MNDA literature but it's not producing the end result which is a better treatment.

I have a sneaky feeling this statement is just a nice marketing phrase to make people stand up and take notice.


Jacqui Priestley
21st April 2011, 15:28
I would like to understand what efforts have been made to raise funds from big corporates by the MNDA. I sent 92 letters out to Corporates in Hampshire & East Dorset asking for support for a charity Golf Day in aid of the MNDA. The majority of replies were refusals because the companies had already nominated their charities for the year. Are we missing a trick by not talking to big business early enough or regularly enough??


21st April 2011, 16:34
Hi Jacqui,

Brilliant question! It's about time some of the big multinational corporations gave some of their vast wealth to smaller charities like the MNDA.


1st May 2011, 17:05
I understand that over time this forum will accumulate a host of information pertinent to new sufferers. I can see no easy way to access that information. Could some thought be given to devising such a facility.

By way of example, I'm thinking of Google's word wheel (correct name?) which throws suggestions at you as you type your query in the search box.

2nd May 2011, 14:54
Further to my last post on searching, the search system here falls far short of that on Google. Try a search here for Rilutek and you get 13 threads which contain 178 posts and replies which will just take too long to 'drill down' and find the nugget being sought. The advanced search is no better at sorting out relevant posts and replies unless you add extra search criteria which may well not be known to you in advance.

I think we need a search facility which can get to the information being sought quickly, propping up options in some sort of priority order, and taking us straight nto the relevant post or reply. But I am just one person and many others must have an opinion. Please say what YOU think.

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