Patron: HDAI won the patronage of Mary Robinson, President of Ireland in 1993. A group representing Huntington’s families visited Aras an Uachtarain in 1994. The President ended her term in 1997 and we wish her will in her new role. Our new patron is Mary McAleese, President of Ireland.

Management: The Management Committee is elected by the membership at Annual General Meeting and meets monthly. The Memorandum & Articles of Association provide the basic rules it follows. There is also a Staff sub-committee and a Research sub-committee. Other subcommittees are set up according to the needs of the Association.

The Development Officer and Executive Officer attend Monthly Committee Meetings but do not have a vote. Guidelines have been drawn up for the Development Officer, Executive Officer and Committee members. The Association strives to maintain a cost effective office which can call on external support at busy times i.e. FÁS staff in Carmichael Centre, volunteers or contracted expertise.

Training and Development:  The Association is committed to the provision of training. Committee members and staff are encouraged to take part in training. Many of our Committee members are restricted in the time they can allocate. Written material is provided to inform new members. Every new member is provided with data relevant to the monthly meeting in advance of each meeting. Where possible books which enhance the skills of the committee are provided.