Awareness of MSA

[esj20]

Good morning all,

I’ve been watching, with adoration, today’s start of the cycle challenge by Ed Slater and his team mates raising money and awareness of MND, I wish them every success.

It’s reinstalled in my my resolve to make sure the public are educated about MSA and the effect it has on those who actually have MSA and their family and friends.

Alec

[FredaE]

I understand why they are doing it but i think it is a pity that they cannot mention that there are other neurodegenerative diseases like MSA. I know how awful all these diseases are. I dont need to be forced to re-live the end of my husbands life every time i turn on the news just to increase knowledge of a different disease without any acknowlegement of MSA or any of the others. I am finding it very upsetting

[AMBD in reply to FredaE]

Me too, and the first wife of my poor husband, MSAc, died after suffering for 20 plus years with Huntingtons, as did his daughter in January of this year. I lost my husband 3 years ago today.Yes, it makes me so mad, so little is known about the many other neurodegenerative diseases.

There is the 'general' cancer research covering no doubt many types of cancer.

Why not these awful diseases?

Sorry, not feeling very eloquent

Best wishes to all

[LadyL54]

MorningMND is a cruel unforgiving illness.

Yet again the BBC is promoting another fund raising challenge to support MND charities.

I think the BBC is rather biased in constantly supporting just one charity.

There are many many terrible diseases out there(including MSA) which should also be highlighted.

I think it sometimes just comes down to 'celebrity' support which creates interest.

So find that celebrity!!

Or we have to do an amazing challenge??!!

[FredaE in reply to LadyL54]

at least it is MUCH better known than when my husband died ten years ago as a result of everyones hard work but you are right....we need a celebrity because that is how you reach people..like when poor people used to send boots to Queen Victorie when they thought she need help because she had yet another child

[Flyaway60 in reply to LadyL54]

Agreed.

[Purplegoth]

My husband is a little different but probably in a little worse situation. He has Pure Autonomic Failure (PAF) and there's only 180 people in the country with this condition.! We were told that there is no funding for this condition and next to no research.

Husband has donated his brain and spinal, when he has finished with it, ! to medical science for further information into this condition.

I agree all these minority conditions need press as well. We need a whole bunch of celebrities.