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Feasibility study into forming a single national entity

As a valued person within our HD community, we are writing to let you know that Huntington’s NSW ACT, along with the four other State HD Associations of Tasmania, SA & NT, Queensland and Western Australia, have commenced a process to consider whether or not to form a single national entity, joining together as one organisation.

Why are we doing this?

We believe that there are a number of potential benefits from forming a national entity that should be explored. We have commenced a study, conducted by an expert external organisation to assess whether forming a national entity is both feasible and desirable. The heart of the assessment considers whether this would be in the best interests of our HD community.

Some of the benefits of forming a national entity include:

  • having a bigger voice collectively, and being able to better advocate for the whole HD community;
  • improved, consistent services through the pooling of knowledge and best practices;
  • being able to generate additional revenue on a national scale and from national sources;
  • being more efficient so we can improve the quality and scope of local services; and
  • enabling strong state operations to focus on local delivery of care and services, and local relationships – especially with state governments and funders
What would this mean for the services we currently provide to our clients and members?

We expect only positive changes from forming a single national entity. Supporting people with, and families impacted by, Huntington’s disease is a core purpose of all State Associations. We believe that collectively we can provide and sustain the best possible support and services to the HD community. We believe a single national entity can deliver more and better services to HD communities all across Australia. If we did not genuinely believe this, we would not be considering this option.

The programs and services that could be provided under a single national entity are a key component of the stakeholder discussions to be undertaken with clients, members, volunteers and providers.

Where are we at in the feasibility process, what is the process and what is the timing?

Over the last few months we have explored a number of options on how to form a single national entity and whether the five State Associations are sufficiently aligned in their views as to what a national entity would look like, how it would operate, what sort of services and programs it might offer, and how it would be financially sustainable. There is excellent alignment between the five State Associations and each Board is in broad consensus on most issues.

We are still working through a number of questions and are now seeking to share our current thinking to obtain your input and feedback. We want to hear your thoughts!

We expect this discussion to take around two to three months. A date of September 2022 has been set for each State Association Board to formally vote on whether it supports forming a single national body or not. After that, the members of each State Association will then vote yes or no to joining a single national body by the end of November 2022. The members have the ultimate choice as to how we proceed.

If each Board supports the idea and then members vote yes, a likely start date of a formal national entity would be 1 July 2023.

How can you have your say?

Each State Association is absolutely open to feedback and input in this process – this is one of the main reasons why we are undertaking extensive consultation with you.

We will be holding an online information session at 6 pm on Tuesday 7 June for all members, clients, and volunteers. You will shortly receive an invite to attend. At this session there will be a presentation from the Association’s leadership and then time for questions. In the meantime you can contact Lewis Kaplan, CEO, if you have any questions.

What will happen to the State Associations if a new national organisation for HD is formed and will individual State Associations lose their identity and voice in a national HD body?

No decisions have been made as yet but a likely scenario is that they will be dissolved as legal entities and a new single national legal entity created. In order to ensure ongoing state-based representation there is likely to be an advisory body/committee formed at each state level to ensure a national board and management team have a clear line of communication with state representatives.

The right governance framework (constitution, state representation processes, board composition and selection process, etc.) is being examined as part of the process.

Could I still be a member of a national HD Association?

Yes, we will still have members in the new national entity. The membership structure of the single national body is being looked at as part of the project. We will present existing members with the membership options once these have been determined.

Could I still be a volunteer?

Absolutely. Every State Association greatly values their volunteers, who all play a vital role in supporting their organisations to provide support and services to the Huntington’s community. This will not change.

What would happen to staff who work in the State Associations?

We know that any uncertainty can be challenging for those affected by decisions such as this one being considered, and that includes our staff. We value our staff immensely and would hope to retain the skills and experience of our existing staff in any new entity. If we do form a national entity, we would expect to be growing, so we envisage needing more, not less, staff than we currently have.

Are there any risks associated with a forming a national body?

Yes, as with any change, there are risks if the process is not managed well. Change and uncertainty can present us with things not anticipated. Identified risks are being worked through and a risk register is being maintained so we can manage them as they are anticipated or become evident.

Concluding notes

We think that this is potentially a very exciting opportunity for our State Association. We can see many benefits in being part of a national organisation that works hard and effectively on behalf of the HD community across Australia. We believe it is worth exploring at this time.

Please feel free to contact Lewis Kaplan, CEO, by email if you have any questions, concerns or suggestions. We look forward to discussing further during the online session on 7 June 2022.


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