Old Blogs

Sad days for FA (Friedreich’s Ataxia)

I was very sad to see the ugly tentacles of the “charity” business in full squalid action again.

Regretfully, this time, the exposed activities are concerning the organisation for my own disorder ATAXIA IRELAND.

I very much want this not to be true, but the evidence seems quite accurate and damnable.

I just remember last Christmas when we were all asked to pay a subsidy for the Christmas dinner (at the last moment a mysterious donor was found).

For many, trapped in the increasingly narrowing world which Friedreich’s  Ataxia brings, it was probably one of their few social occasions of the year.

I am so mad on their behalf as well!

I did contact them once or twice in the past, to say that I wasn’t happy to see a begging table outside Penny’s in Newbridge with, two big signs shamelessly proclaiming “HELP THE DISABLED”.

To my shock, when I got closer it was associated with Friedreich’s Ataxia.

The horrible reality is that the people who give to these organisations, are often those who can least afford to!

I have just phoned the association as a concerned member and they just directed me to their website, where there was a very curt statement heralding a response within the next twenty one days.

I should have answered, that I definitely had a loaded comment for them! That I bitterly resented my mother and others of her vintage, standing in the cold rain of a winters day, tempting to hawk Christmas cards for their loose coffers.

I resented also the respite weeks, that were held to ransom due to “lack of funds”.

Will the wheels of the disability wagon/gravy train ever be derailed, slowed down or at the very least punctured?

I am really sick of them all!

Shame on them!

(Update Thursday 26/07/18: To my shame I haven’t this blog since I went to the augmentative meeting of AFI (the more scrupulous I wanted them to get off on the right foot. They did ask for people to speak up and I certainly did.

I was impressed by Al Young and his team. One of my major questions was surrounding the disability industry and the money it generates . This is a new organisation run by people with Ataxia themselves, which makes it a very refreshing change. 

As we have seen, normally the only appearance of anyone with Ataxia, might be on the occasional poster designed to keep the coffers filled up and attention away from the first class lifestyles of the fundamentally disinterested able bodied operators.

I wish them all the very best!

(Update Friday 11th: Just got an email, saying that not only was the CEO leaving, but the entire Ataxia Ireland organisation/ is folding up too!

Their situation was really untenable. I remember a check-up with the Ataxia clinic last year and I expressly told the consultant, that I wanted no association whatsoever with these very shady people.

Let this be a lesson, to all other shady operators in the disability industry!

You can only get away with these things, for so long!

(Update 2/2/18: Great news-have just been informed about a new Ataxia Foundatio Ireland. Hopefully they will provide a good clean service!

(Update Tuesday 05/09/17: Went to the FA Neurologist on Friday 1st September. Barbara Flynn herself was there. I asked her if the society had responde.d to the charity regulator as promised by the 1st. She said that they got everything arseways and that “paper doesn’t refus0e ink”. I didn’t have the quickness to say that they couldn’t all be wrong.

White collar misdeeds are treated far too leniently in this country. If someone out of desperation, robbed a pint of milk or some food from a supermarket, the repercussions would be immediate, maybe over the top and lasting!

The sad thing is, that now the spotlight will diminish and for them the gravy train rolls on!) 

(Update Monday 21/08/17: I see that they have been given an extension, to respond to the charity regulatory authority. This is all very sad and unfortunately the biggest losers will be the ordinary body prisoners of FA who already have enough to deal with!)


Links used for this Blog:






1 0 0 0 0

Comments are closed.