If you wish to become a board member, your application will be put to the Annual General Meeting (AGM) held in November each year. To be eligible, you need the following:
- not be disqualified from managing a corporation, within the meaning of the Corporations Act 2001
- not been disqualified by the Australian Charities and Not-for-profits Commissioner at any time during the previous year from being a “Responsible Person” (what the ACNC Act calls a ‘responsible entity’) of a registered charity
- agree to notify the Society immediately if you become disqualified from managing a corporation within the meaning of the Corporations Act 2001, or become disqualified by the Australian Charities and Not-for-profits Commissioner
The Current Board Members are:
John Reiman
President - SAJohn’s OI journey started over 20 years ago when he met his wife, and has been carried on with 2 kids with OI. Currently working in disability and aged care, John is passionate about advocacy in these areas.
Dr Matthew Grosvenor
Vice President - NSWMatthew was diagnosed with OI later in life. He’s passionate about supporting and advocating for people with OI and related disorders. Matthew is a computer systems engineer in the finance sector. He brings significant experience corporate governance, marketing and public relations. Matthew holds a PhD in Computer Networking from the University of Cambridge.
Bernadette Saberton
Treasurer - SAHi everyone, I’m Bernadette and am the Society’s Treasurer. I have a finance background of 20 years in both Commercial and Government. I’m part of a Type 1 OI family and in my spare time love to research local and family history.
Amanda Reiman
Secretary - SAHi everyone, my name is Amanda and I am the society’s secretary. I have been a member of the board for 6 years now. I have OI type 1, with a large family background with OI as well. I am a mum and I am passionate about all things creative.
Johan (Joe) Potgieter
Membership / Website Coordinator - QLDA Brisbane-based IT professional with 30 years of experience, Joe manages the Society’s website and membership administration. He has a personal connection to our work, as he lives with Osteogenesis Imperfecta (OI) type 3, a condition that has been present in his family for five generations.
Elfie Potgieter
Newsletter Coordinator - VICHello! My name is Elfie and I am the Newsletter Coordinator for the Society. I am 21 years old and a Visual Arts student with type 3 OI. I have a passion for oil painting and portraiture!
Adam Searle
Board Member - NSWAdam was diagnosed with OI Type 4 at the age of two and joined the board in 2024. With more than 20 years of experience in software development and technology, he has held senior leadership roles, including Director of Software at Cochlear, before beginning a Master of Commerce in Finance at the University of Sydney. Passionate about inclusion and accessibility, Adam loves discovering new accessible travel experiences, keeping up with the excitement of Formula 1, and enjoying a good book in his downtime.
Dr Evianne Grosvenor
Board Member - NSWEvianne was born in the Netherlands and raised on the Caribbean island of Curaçao, she lives with Osteogenesis Imperfecta and brings both personal experience and professional expertise to the Board.
Evianne holds a PhD in Psychology and Law from the University of Cambridge, where she also served as President of the Graduate Union. In 2016, she moved to Australia with her husband, Matthew, and has worked across roles supporting justice and equity—including with the Royal Commission into Institutional Responses to Child Sexual Abuse and Macquarie University’s Student Diversity and Inclusion, and Student Grievance and Discipline teams.
Evianne is a committed advocated for disability rights. She was was a finalist in a reality TV programme, the Dutch version of Miss Ability (TROS Mis(s) Verkiezing) (2007), and in 2020 she participated in a research photography project that challenged limiting perceptions of disability. Her work was featured in exhibitions across Sydney.
Katie Ferris
Board Member - NSWKatie was diagnosed with OI type 1 at 18 months of age and is passionate about health advocacy and patient centred care, especially within the OI community. She holds a Master of Nursing Practice and works for NSW Health in Research and Oncology nursing. You can connect with Katie by emailing: katie@oiaustralia.org.au
Karu Keogh
Board Member - NSWKaru was born with OI Type III and treated with bisphosphonates from around 1 and a half to 22 years of age. They live in the Northern Rivers region of NSW and have skills in music, singing, acting, voice acting, video editing, graphic design, and drawing (traditional and digital). Karu is a strong disability advocate and, along with personal experience, aims to focus on the experiences of young people and individuals with OI across various topics to the Board.
karu@oiaustralia.org.au
Pronouns: They/Them
Want to join the board? Read what roles are available by clicking here
History of the Board
The Society was formed in 1977 by parents and friends of people with O.I. and remains a voluntary organisation with no paid staff or Government funding. The OI Society was originally incorporated as the Osteogenesis Imperfecta Society of NSW (Brittle Bones) under the seal of the Corporate Affairs Commission in Sydney on 5th May 1978 with a Previous NSW Registration Number is 204 932-15. The Society is now an Australian Public Company Limited by Guarantee. ACN 001 534 309
The OI Society was registered with the Australian Charities and Not-for-profits Commission (ACNC) as a charity with ABN 13 001 534 309. All donations to the Society are Tax Deductible.
The business affairs of the Society are managed by a Board of at least six persons and no more than 12, including a President and Vice President, all of whom are elected at the AGM.
The Society has been most fortunate over its 39 years with the outstanding dedication of its Board members (many of whom have OI) and particularly in the strong leadership shown by its presidents in pursuing the Society’s aims. Initially as the OI Society of NSW under Lynn Foxall’s presidency in 1993 the Society changed its name and widened its focus to help support all of Australia under the name of OI Society of Australia. Prior to 2009, the OI Society Board was made up of members from Sydney as meetings were held on a monthly basis in person however, this precluded people outside of Sydney from participating. With thanks to the progressive thinking of the then President, Julie Stonestreet and the board of that time together with the rapid improvements in technology it was decided to facilitate monthly Board Meetings and AGMs to Skype conference calls. This has enabled the Society to tap into the broader nationwide community of people seeking to participate and willing to volunteer to be on the board and have a say in how the Society is managed. Today, we have board members and state representatives from all states of Australia with the exception of the Northern Territory, which we are working to remedy shortly.
Special credit should be given to the sterling work of the early presidents who had the most difficult task of getting the “show on the road” from a standing start. At that time in 1977, little was known, not only about Osteogenesis Imperfecta, but about the number, distribution and circumstances of people living with the condition in the community.
Since the Society’s inception, the Committee has been composed almost entirely of family members and adults with OI. OI is a relatively rare condition with best estimates varying between 1 in 20,000 to 1 in 50,000. Individuals are thus comparatively few and unlikely to be more than 1200 in Australia and widely scattered. The enlistment of volunteers to run the Society has always been challenging particularly as most have little or no experience in management of a charitable organisation. However, approximately 50 stalwarts have come forward over the years and despite the difficult learning curve many experience, the progress and success of the Society has been creditable.
In 2015, the Society held its first conference outside of Sydney in Brisbane. This conference was pivotal in increasing membership within Queensland and also raising awareness of OI within the state.
The next conference was held in Melbourne in 2017, which was our 40th anniversary conference and again it was a very successful conference and resulted in significantly more members joining up from Victoria.
In 2017 a new website using a common web tool – WordPress – was launched which resulted in the Society being able to update and manage the website themselves. At this time online membership payments and and an online donation process was established. This has set the Society on a more sustainable footing enabling members to easily pay their membership and renew automatically if they so desire. This has also helped increase the number of financial members in the Society and reduce the administrative burden of producing manual receipts and maintaining manual paper based records.
Also in 2017 the Constitution of the OI Society of Australia was reviewed and updated to cater for changes in both technology and practices since it was originally written. This was drafted by board member and lawyer Ian Irwin and approved at the 2017 AGM. A copy has been lodged with the Australian Charity and Not-for-Profit Commission.
In 2018, all documents and photos held by the board were digitised and loaded onto a G-Suite account. Enabling anyone with secure access to view these documents from anywhere across the world. This also ensures that documents are not lost in transition of board members. All state reps and board members have a Google sign-in and can access common documents from a team drive.
In addition to these activities in 2018, the Board undertook a strategic review to ensure that the focus of the Society continues to meet membership needs. This was done face-to-face in Sydney and was facilitated by the President Fern Dyball. The following was developed during the sessions and finalised soon after. It remains the cornerstone of how we operate.
Vision
People living with Brittle Bones in Australia have no barriers
Mission
The OI Society of Australia exists to improve the lives of people living with OI in Australia by raising awareness, educating and collaborating with health professionals and providing connection opportunities for members.
Strategic Priorities
- Awareness
To raise the awareness of Brittle Bones across the board in Australia in order to reduce the stigma associated with it and ensure that people living with OI are treated fairly and equitably.
- Connection
To connect with people living with OI and organisations that support people living with OI in order for people to get the information and support they need when they need it.
- Sustainability
To ensure that the OI Society is still in existence and going strong in 50 years time
- Research and Innovation
To maintain a watching brief on all OI related research to ensure that our membership are informed 2019 focused on delivering the biennial conference in Sydney and building local state support groups with a strong presence and awareness events being undertaken in Qld, SA and WA. In addition to this, we continued to build our strategic priority of awareness through the OI Stories project. This project was possible as a result of a small grant from ConnectGroups in WA. The outcome is that there are now 4 stories of OI people professionally made available for people to view on our website.
Past Board Members of the OI Society of Australia
AGM 2018
President: Fern Dyball
Vice President: Bronwyn Bant
Treasurer: Trish McFerran
Secretary: Bernadette Saberton
Membership Officer: Lynn Dunn-Marler
Web Master: n/a
Board Members:
Arthur Szeto, Jenny Cowley, Amanda Reimanr, Wendy Pilolo, Sueallen Mcmeekin
Medical advisory panel:
Professor David Sillence
Dr Verity Pacey
Dr Jenny Ault
