The HSE has launched a review of a charity on foot of a complaint that has been made.
In a statement on Thursday, the HSE confirmed that Ataxia Ireland, a national voluntary organisation that cares for people disabled with Friedreich’s ataxia and other genetic ataxias, was the subject of the complaint.
“The HSE can confirm that a complaint has been received in relation to Ataxia Ireland,” said the statement.
“Following receipt of the complaint, clarification on a number of issues was sought and subsequently received. A meeting was held with Ataxia Ireland during which the complaint was discussed along with a number of other issues.”
The statement added that the charity, which is based in Leopardstown, Dublin, confirmed to officials at the meeting that the organisation will “fully co-operate with any HSE review”.
Ataxia Ireland could not be reached for comment.
Friedreich’s ataxia is a genetic and progressive disorder of the central nervous system which usually manifests itself in children between the ages of 6 and 16 years. However, in some instances the onset for Friedreich’s and other genetic ataxias can be much later.
Due to the genetic factor, more than one person in a family may be affected. The general symptoms are clumsiness, difficulties with balance, lack of co-ordination and, in time, a slurring of speech.
Although there is no specific treatment for any of the known ataxias, fundamental research into its pathogenesis is ongoing worldwide, and there are various ways in which the burden on sufferers and their relatives can be lightened.
In recent years, the defective genes which cause several of the genetic ataxias have been identified and, therefore, clinical tests can be undertaken to identify the particular ataxia and/or to establish if other siblings are carriers of the defective gene.
