Huntington's Disease Association Wellington

HD (Wellington) Inc. PO Box 30 420 LOWER HUTT 5040 Chairperson: Cecil O’Neale Tel: (04) 528 8094 Mob: (027) 213 4113 Huntington's Advisor: Caz Livesley (Greater Wellington area) Tel: (04) 569 3252 Mob: (021) 344 445 Email: Caz Livesley Social Worker: Annette Turner-Steele (New Plymouth /Wanganui/Palmerston North) PO Box 101 Marton, NZ Tel: (06) 327 7389 Mob: (027) 496 6500 Email: Annette Turner-Steele Social Worker: Tanya Jeffcoat (Hawkes Bay and Gisborne) PO Box 4211 Marewa Napier 4143 Tel: (06) 835 3020 Email: Tanya Jeffcoat General Enquiries Email: enquiries

STRUCTURE
A small committee works valiantly to support 3 part time Social Workers and 1 Huntington’s Disease Advisor. The Association is funded through membership fees, donations, bequests and fundraising.


SERVICES
The Association is committed to ensure that those with HD have a good quality of life and can be maintained at home as long as possible. Our employees, Lynn, Carla, Jane and Gill all work part time hours. The Social Workers and Huntington's Educator/Advisor manage flexible hours to meet needs of the HD families in their areas. They are contactable on weekdays either by cell phone and /or landline. Answer phones are always on to take messages. They are available to:

	provide a range of individual and family-based services including information, advocacy, education, problem resolution, advice and referral or networking
	provide information services to caregivers, health professionals, community agencies and the public
	maintain close liaison with clinical specialists, Home and Community Health Services, Central Regional Genetic Services, Needs Assessment and Service Co-ordination Services (NASC), Disability Services and relevant community and government agencies
	facilitate Support Groups. Currently groups are operating in Wanganui, Hawkes Bay, Gisborne, and Wellington. These groups meet every 4 -8 weeks. For those with HD in Wellington, a hydrotherapy group operates fortnightly at the Hutt Hospital.

They are contactable on weekdays either by cell phone and /or landline. Answer phones are always on to take messages.

THE WELLINGTON ASSOCIATION
A small committee holds meetings every 6-8 weeks. New members are always welcome. The Annual General meeting is usually held in September or October. The Wellington Association:

	Produces the 'Huntington's News', the quarterly newsletter of the Huntington's Disease Associations of New Zealand, which is distributed nation wide.
	Organises a bi annual camp for young People from Huntington's families throughout New Zealand. The camp provides young people with an opportunity for support, advice and up to date information on HD.
	Works closely with the management and staff of Amaryllis House in Lower Hutt, the first residential unit dedicated to the care of those with HD in New Zealand.
	Organizes the National Huntington's Conference every 2-3 years. This provides an opportunity for professional and family members to share information on the latest research and clinical care for those who are affected by HD.Membership is open to individuals and families associated with HD and supporters of the Association. Annual membership (individual or family) is $20 but if anyone is unable to pay this they are not precluded from receiving the National Newsletter, local notices and help from our Social Workers or Educator/Advisor.

TRUSTS
The Wellington and Central North Island Huntington's Trust was set up in 1993. The aim was to get enough funds to enable it to help with the day to day running of the Wellington association and /or specific projects. Bequests to the Trust can be made in cash, shares, real estate, or any other property and can be by way of a gift during your lifetime or can be bequeathed in your will. Bequests are free from estate duty. If you require further information please contact the Chairperson of the Trust, P O Box 30420, Lower Hutt 5040.