Hello everyone, my name is Jolanda Visser and I am from the MPN Alliance Australia. I would like to tell you about the set up of this patient advocacy group of volunteers.

Slide 1 – MPN Alliance Australia

Lara Chapman was diagnosed with ET in 2008.

  • After a few years her diagnosis was changed to PV.
  • Lara, as most of the MPN AA members, was struggling to find relevant up to date information on MPN’s.
  • In 2013 she contacted the Leukaemia Foundation Queensland who assisted with the establishment of a support group.
  • In 2014 Lara started a fundraising campaign and managed to raise $40,000, of which $24,000 was donated to a MPN Researcher in Queensland.
  • In 2015 Lara reached out to members of the MPN Community to get input to where the remainder of the funds should be put towards
  • A small group of MPN patients across Australia met via a Skype call and all shared the same frustration of how they were diagnosed and the fact that they struggled to have access to up to date Australian information.
  • We all agreed we should continue raising funds and find ways of making a difference to the MPN Community.
  • This was the start of the MPN AA.

Slide 2 – New or Existing organisation?

Even though, the agreement was to continue, we straight away had to overcome some barriers.

  • It was difficult to find volunteers, as most of us are MPN patients who are struggling with physical limitations and diminished energy levels.
  • We also faced some logistical challenges, as most of the group members live in different states, with the closest being about 800km away.
  • We found that Skype and email were the most effective way to communicate.
  • Some were passionate to start their own organisation, while others thought it would be better to leverage of an existing organisation.
    Investigations showed that setting up an independent organisation is not easy. You need to understand in what charitable and legal framework the organisation fits.
  • Then there is the administrative workload and cost of compliance
  • The majority of the group agreed that this would not be sustainable and suggested that we explore existing organisation’s with whom we could work together

Slide 3 – Partnership with existing organisation

  • We agreed to look for an organisation where we could plan and execute ideas independently, yet be backed up by a large organisation who could support our goals.
  • We approached the Leukaemia Foundation of Australia who was known to most of us, as we had all tapped into some of the support services they offer.
  • We started talks and explained how important it was for the MPN AA to remain independent and operate under our own preferred name.
  • Working with the Leukaemia Foundation allows us to utilise their existing experience, networks and IT infrastructure.
  • Our partnership allows us to focus on what is important, such as fundraising and providing benefits to the MPN Community.
  • It reduces our time that would otherwise be spend on administration, compliance and audits.

Slide 4 – Terms of Reference and Code of Conduct

  • As we progressed establishing our setup, we realised that we needed a bit more formality in regards to who we are and how we would like to interact with one and other.
  • Having a Project Management background myself, I created a Project Charter, which would assist in providing guidelines.
  • We agreed on our own Code of Conduct that clearly set the boundaries on how the group would interact with each other, with the Leukaemia Foundation and with external parties
  • The Terms of Reference describes, who we are, what our mission, goals and Guiding Principles are.
  • We also agreed that any Intellectual Property remains the MPN AA’s, regardless of who created the idea or service.
  • After, this was all agreed on, we drafted a Memorandum of Understanding, which outlined the operational guidelines between the MPN AA and the Leukaemia Foundation.
  • These documents are ‘living’ documents are are constantly referred to when the group is required to make decisions and are reviewed once a year.

Slide 5 – Achievements

In the meantime the group continued executing initiatives.

  • And we as members of the MPN AA are proud to have been able to achieve a positive outcome of the following initiatives o We created a trusting relationship with the Leukaemia Foundation and the many stakeholders
    • Under guidance from Lara Chapman, MPN patients were encouraged to make submissions to the 2015 Senate Committee into availability of new, innovative and specialist cancer drugs in Australia
    • We built a supportive partnership with the MPN Australia and New Zealand patient Facebook Group under leadership by Josie Muller who you may have seen or spoken to at this conference. o We participated in the first Australian MPN Stakeholder meeting organised by the Leukaemia Foundation in August this year
    • Fundraised $20,000 since February this year o Setup of MPN AA public Facebook Page
    • Creation of the MPN Alliance Australia Website, which is live, but not yet promoted
    • Started building valuable relationships with International MPN organisations and individuals

Slide 6 – Challenges

Although we have achieved a lot so far:

  • The last 18 months since our first Skype meeting has not been without its ups and downs
  • The workload has been onerous at times and the email traffic can be overwhelming from time to time, which
  • confirmed to us, that we made the right decision to partner with the LFA
  • There has been a major organisational restructure in our partner organisation
  • We work hard on “keeping on the same page”, which can be difficult at times due to communication barriers, time and distance.
  • All of us suffer from illness burden and face restrictions, which result in us needing to take some time away from emails and messages to recover.
  • Another major challenge we have is that we do not have a fundraising strategy. Although we managed to raise funds from within our community, we realise that this is not sustainable, as a lot of MPN sufferers have limited funds available.

I hope that this story shows that volunteers and patients are able to make a positive difference while working under the umbrella of an existing organisation.

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