The AHDA (Vic) 

MISSION
To promote the needs and interests of people affected by Huntington disease.

VISION
All people affected by HD living meaningful and hopeful lives as valued members of the community, with empowered choices for best quality treatment, care and support and equitable, timely access to resources.

GOALS

  • To increase understanding and knowledge in the community of HD as a rare neurological disorder, and the way it affects individuals and families.
  • To ensure people affected by HD have access to relevant, latest, highest quality information.
  • To ensure people with HD and their families have access to appropriate support and advice.
  • To ensure people affected by HD have access to high quality services when needed

OBJECTIVES

  1. Increased chance that people directly affected by HD will to be able to live their lives purposefully, meaningfully and hopefully.
  2. Increased opportunities for people directly affected by HD to be able to make effective choices and decisions about their own lives.
  3. Increased likelihood that people living with, or caring for someone directly affected by HD will be able to remain positively connected to them.
  4. Reduced likelihood of discrimination against people affected by HD either via devalued social status or through inadequate resources or services.
  5. Continued improvement in the quality, accessibility and timeliness of support, care and treatment services for people affected by HD.

STRATEGIES

  1. Maintaining the Association as a network of members representative of consumers, academics, professionals, service representatives and policy makers, committed to promoting the interests of people affected by HD.
  2. Undertaking marketing and public relations activities that raise the profile of HD and increase understanding in the community.
  3. Securing resources, including funding that can be used to promote the interests of people affected by HD. Undertaking appropriate research to inform HD service developments, advice and consultation. Developing and providing a range of services that best enable achievements of the Associations objectives, within the limits of available resources.

AHDA (VIC) INC AFFILIATION WITH OTHER HD ASSOCIATIONS
Following the establishment of AHDA in Victoria, successive states in Australia quickly established their own Association. AHDA in each state is separately constituted and incorporated. However, each state is closely networked via a national AHDA forum, presided over by a National President.

The role of National President is rotated around the states and a National Forum is held biennially. The National AHDA forum nominates a delegate to the International Huntington's Association (IHA) and via this, all Associations are affiliated. Thus a worldwide spirit of cooperation & generosity in sharing information & resources is sustained to promote the needs and interests of people affected by HD.

HISTORY
The Australian Huntington’s Disease Association (AHDA) (Vic) Inc was formed in Victoria Australia in 1973.

In the early 1970s a Huntington Disease research project was conducted in Victoria through the University of Melbourne. When funding for the project expired, the small group of professional workers involved invited families who had participated in the study to meet together.

Founders of the Association offered support and information to one another and to newly diagnosed families. They also began to identify needs of the Huntington's community and to advocate for services. Initially the Association operated without any government funding or paid staff.

In these early days funding was problematic and much work was put into obtaining basic resources for information and small group meetings. Gradually the Association was able to grow and develop until in 1983 the first staff member was employed.

In more recent years AHDA (Vic) Inc has been successful in gaining additional funds to meet the specialist service needs of people affected by HD. Today, a variety of services are offered through government funding, the support of trusts and foundations, and community support for fundraising initiatives.

AHDA (Vic) Inc acknowledges an enormous debt of gratitude to two remarkable people - Psychogeriatrician and HD specialist, Associate Professor Edmund Chiu and Social Worker, Ms Betty Teltscher - both of Melbourne University. They have nurtured and supported the Association over the years of its development and have given remarkable professional leadership to the establishment of specialist services for the care of people affected by HD in this state.

A reflection on the Association's history by Betty Teltscher in 1997 gives some insights into the evolution of AHDA into the organisation that it is today.

GOVERNANCE
AHDA (Vic) Inc is incorporated in Victoria and registered as a not-for-profit charity with tax deductible status. The Association holds an Annual General Meeting each year at which members receive a report on the previous year's activities and elect a Committee of Management. This Committee of Management is for governance of the Association.

AHDA (Vic) Inc Committee Of Management 2005-2006

President:
Judy Mackenzie

Members:
Tony Mims

Helen McKenzie

Vice - presidents:
Angela Weller

Treasurer:
Simon Philpot

Secretary:
Victoria Brookes

MANAGEMENT
The AHDA (Vic) Inc Committee of Management employs a Chief Executive Officer who provides executive support to the COM, acts as the Association’s Public Officer and is responsible for management of the service operations of the Association.

The Chief Executive Officer is Jill Hitchcock. Jill welcomes contact in regard to any matters that affect the Association, or to give feedback and suggestions, email: jillh@ahda.com.au.



Home