What Should Be The Most Loving tribute to PSP, CBD and MSA Fellows ?

[PineEater]

What could be the most loving tribute to PSP, CBD and MSA people who leave this world ? Quotes, eulogies, and stories etc do serve as tributes. However, neurodegenerative diseases like PSP, CBD and MSA have no cure as yet. The sufferers lives are a living hell. So, what is urgently needed is a cure for these sufferers. We can not bring back our fellow sufferers who have left for good but we can at least bring happiness in the lives of those who are suffering from these horrible diseases. How can a cure for such diseases be found out? That can only be discovered through research. And research requires funds. Obviously, a most appropriate tribute to such people on part of the relatives and friends of the sufferers will be to donate money to the research bodies like associations or trusts to enable them to carry out research on such horrible diseases. In my view that would be the most appropriate tribute to those gone if we could cure those as soon as they get afflicted with these awesome diseases. And the most desirable tribute by the sufferers themselves will be to direct in their will major part or all of their estate to a research fund under research bodies like associations or trusts to conduct scientific research and advancements leading to the desired cure for these diseases. Further, I am of the opinion that allocating in will on part of the sufferers a part of their estate to their family members who can live independently is highly undesirable. That should instead be allocated for the research purposes to help find a cure for such diseases.

[LuisRodicioRodicio]

Hi Pine Eater!

In my opinion, these diseases are abandoned because they represent a small percentage of the population and in terms of the market, they are of little interest. From the political point of view of the State, they only represent a handful of votes with little influence in elections.

Certainly, if nothing is done by those affected, very little will be done for the rest.

So it seems to me that it is good that an organization with knowledge and criteria (f.i. PSPA) manages a donation fund to finance research into this type of disease, but also, the State or the states corresponding to the research team should put in at least as much as what is contributed by the citizens.

Hug and luck.

Luis

[Golden63 in reply to LuisRodicioRodicio]

You are so correct with respect to the small percentage of people who have these diseases and therefore not cost effective. Our neighbour who works for a research organisation confirmed this so in turn the handful of votes are non effective.

The PSPA association does take donations for research and offer advice in how people who have the disease can help such as brain donation'

We also have to raise awareness of PSP/CBD . How many times do you mention these and people look at you blank and regretfully i am talking about those who work in the health and care profession.!