OI Society – Five Year Vision

1. OI Society – Five Year Vision Workshop outcomes 29th July, 2007

2. OI Society’s biggest successes to date, which should be leveraged in the future, were identified as: • Weekend conferences • An opportunity for families to come together and tap into medical experts • Provides on-going support and information exchange • Newsletters • A credible source of information and community to members • Supporting research ie through society donations • Adult days (annual) • Re-connecting with adults who are no longer captured through children’s hospitals • Good, long-term governance of the society

3. In line with its mission and aims, the five-year vision for the OI society was identified to be: 1. Support and connect more people with OI and their families • ‘Support’ means: • Creating a society where people with OI and their families feel safe and part of a family • ‘Connect’ means: • Meeting like-minded people who provide each other with lasting support • ‘More’ means: • Across Australia • All age groups, particularly adults • Not necessarily an increase in membership but that people are aware that the support exists and they can access it if they need it 2. Make more medical professionals aware of OI and have a deeper understanding of it (including the condition in adults) 3. Provide accurate, available, and practical information on OI and the society 4. Increase funding/sponsorship of the society to at least $100,000 per annum for the next 5 years • This includes $100,000 per annum for research funding/donations 5. Increase the profile of the OI society, targeting: • Families – benefit: ensure that the families know there is support available to them and they can access it • Medical professionals – benefit: ensure that OI receives adequate attentions and focus in the medical field to ensure better OI suffers are identified, receive better care, and on-going research is continues • Corporations – benefit: improve corporate funding of the society

4. To achieve this vision over the next five years the proposed priority actions for the OI Society were identified: • Bring on a resource, a ‘Capital Growth Manager’ to achieve vision # 4 of increasing funding • Utilise the services of Rich Male to develop a strategic funding plan for increasing the OI Society’s funding • Bring on a resource, a Capital Growth Manager, to deliver the strategic funding plan through funding and promotional activities • This role will initially be established as a short-term contract role with defined targets. The long-term need of the role and the incumbent to be assessed at the conclusion of the initial contract 2. Bring on a resource, ‘Communication and Resource Support’ to achieve vision # 1 of supporting and connecting people with OI and their families • The role would include: • Acting as the first point of contact for those contacting the OI Society • Developing a plan to pro-actively provide support and connection to people with OI and their families and co-ordinating the delivery of the plan • Advising the Board • This role is not a counseling role 3. Review the future governance and operation of the OI Society (ie role and operation of the Board in light of new responsibilities)

5. The group brainstormed the following ‘blue-sky’ ideas for activities the Society could undertake over the next five years (within each Aim) Aim 1 - Information and support to those affected by OI: • The OI Society provides a single source of information on OI and be the ‘go-to’ for up-to-date information on OI • Funding • Equipment • Housing etc • Eg information provided through a ‘bumped up’ internet site • The OI Society provides immediate, personalised information or support to those that require it • Hospital staff in maternity wards can identify and know how to deal with OI immediately • Eg doctors in isolated places know about OI and how to approach the treatment • Eg medical conferences on OI every two years or as part of a larger ‘bone condition’ conference • The OI Society targets GP’s in particular to develop a deep understanding of OI and OI in the transition years from child to adulthood • The OI Society maintains strong relationships with like-organisations • The OI Society continues to provide the very successful weekend conferences • Everyone in Australia with OI knows about (or is involved with) the OI Society and how it can support them • Exchange of information • Through State support groups • There is strong support through each of the Sate support groups, within a strong national body • These will need to be reviewed once the fundraising and support + connection strategies have been developed

6. The group brainstormed the following ‘blue-sky’ ideas for activities the Society could undertake over the next five years (within each Aim) Aim 2 - Encourage and support research: • The OI Society draws on a secure funding base to continue supporting research • e.g. reach capital security and use the interest to fund society expenses Aim 3 - Professional education and community awareness: • The OI Society runs annual or regular events to increase awareness and raise funding for research • may include a gimmick to increase recognition and raise funding (similar to Red Nose days) • social gatherings and biennial seminars • The OI Society is supported by a high-profile patron • The OI Society supports and promotes the study and research of OI with GPs as part of their compulsory on-going learning • eg developing core material to be included as part of the curriculum • These will need to be reviewed once the fundraising and support + connection strategies have been developed