|
|
||||
7A Taylors Road
Sandringham
Fax (09) 815 7260
Morningside
Auckland, NZ
e mail huntingtonsakld@xtra.co.nz
Auckland, NZ
FAMILY LIAISON SERVICES
Previously known as Field Officers, now Family Liaison Co-ordinators, Beth Gordon and Jo Dysart are contracted by the
Auckland Huntingtons Disease Trust. They
manage flexible hours and share the total 30 hours a week between them. This way 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, Northern Regional Genetic
Services, Needs Assessment and Service
Co-ordination Services (NASC), Disability Services, researchers at University of Auckland
(Division of Anatomy and Radiology, Department of Psychology) and relevant community and
government agencies
facilitate support groups and
education with gene-positive persons
host Saturday Seminars with
relevant guest speakers where people attending can meet each other and share a BYO lunch
(a telephone network is used to notify dates)
organise Carer Seminars and
invite informal caregivers to attend
provide in-service sessions for
formal carers as requested
provide update addresses of
persons wanting to be on the “Huntington’s News” mailing list
maintain the local mailing list
and inform people of upcoming events
OFFICE and
HOURS
The small
mezzanine office is at The Neurological Centre. The Centre is open 8.30 – 4.30
during business hours (closed Christmas-New Year). The office is staffed on Wednesday
mornings 9.30 – 12.30, but Beth and Jo are available by appointment at other times.
RESOURCES
The office holds information on a
wide number of issues pertaining to Huntington’s.
Print material, books and audio-visual material may be borrowed or bought. Photocopying and internet facilities are available
on-site.
ORGANISATION
The Huntington’s Disease Association (Auckland) Inc is an Incorporated
Society servicing the greater Auckland and Northland areas. The Association links with other HD Associations
in New Zealand and has joint affiliation with the International Huntington’s
Association.
PATRON
Professor Richard L M Faull
Division of Anatomy with Radiology, University of Auckland
OBJECTIVES
Promote awareness, knowledge and
understanding of the Huntington’s gene and disease.
Assist members of families
affected by Huntington’s and to assist their carers and communities.
Facilitate the provision of
suitable professional assistance to those at risk of HD, those experiencing HD and their
families.
Promote research into all aspects
of Huntington’s disease.
COMMITTEE
Committee meetings are held every six weeks and new members are welcome. The Annual General meeting is usually held in June
or early July at the Disability Resource Centre. Researchers
are invited to provide updates on current research initiatives and developments.
FUNDING
The Association is partly funded
through membership fees, donations, bequests and fundraising. It is supported by the fundraising efforts of the
Auckland Huntington’s Trust: contract with Disability Resource Centre (DIAS funding),
past grants (ASB Trust, Paul Newman Foundation, McKenzie Trust) and current grant (Portage
Trust).