Another Ineffective Awareness campaign?

I will probably be flamed by the MND community for writing this but whenever I read about a new awareness campaign my heart sinks. Actually no, my blood boils. I have been living with MND for 5 years and am now paralysed from the neck down and can't speak or eat. For the first couple of years I was enthusiastic and optomistic about improving awareness and was involved with fundraising and offered myself to be the subject of a campaign. But I have become frustrated with the MNDA's approach to improving awareness. Nothing is changing but they persist with the same ineffective strategies. Ask 100 people if they have heard of any of the previous campaigns or the personalities behind them and I doubt if any have. Asking 10000 will probably not reveal many more, and those that do recall them probably only know of them because of a personal association with the disease. We need a national radio or tv campaign. Yes, it isn't cheap but my efforts (hours of laboriously eyegazing letters) with ideas of raising money specifically to fund such campaigns have been effectively albeit politely deflected. I am convinced that awareness is no better now than 5 years ago and it will be no better in another 5 years if the approach to campaigns doesn't change.