FOP Australia are very proud to share that during the 2020/21 financial year the FOP community in Australia and New Zealand gave $68,762 to support the global effort to support people with Fibrodysplasia Ossificans Progressiva and their fight for a cure.

Despite the challenges of fundraising during a global pandemic, requiring many planned events to be cancelled or changed, this is an increase over $18,000 more than the previous financial year. This is a great credit to the passion and commitment of our community, who found an amazing variety of ways to show their support.

• Fundraising activities ranged from selling books, running a half-marathon (solo!), collecting old car batteries for scrap metal, and hosting a footy tipping competition. It was amazing to see many events organised by people who have not held fundraisers before, including new community members.
• It is also very moving to see a large number of individual direct donations this year. At a time when many people are struggling, this show of support means more than ever.
• The wide range of non-financial contributions made by volunteers to facilitate activities and keep our small charity running are also vital and sincerely appreciated.

The FOP Australia board is comprised of volunteers who are deeply committed to our shared goals, and to maximising the benefit of all your generous donations and hard fundraising work. In keeping with our prospectively announced KPIs for the 2020/21 year:

• 50% of funds, totalling $34,381, raised will go to the global research effort. This will be used to invest in a range of research initiatives in order to maximise our impact on progress towards a cure.
  • As part of the contributions to research, $5000 will be given to the Shore Lab at the University of Pennsylvania, to support their ongoing efforts in to understanding this disease. This work on the foundational science of FOP forms the basis for many potential future therapeutic options.
  • Half of the remaining sum, totalling $14,690.50 will go towards the gene therapy campaign. This will be contributed via the IFOPA “In Pursuit of a Cure” program.
  • The remaining sum $14,690.50 will be invested in other drug development initiatives co-ordinated by IFOPA, and the board will work with IFOPA staff to determine where this can have maximal impact. In previous years, this has included support for the ACT for FOP grants which have identified and investigated multiple potential approaches towards effective treatment. This is also contributed via the “In Pursuit of a Cure” campaign, bringing our total campaign contribution to $29,381.
• Aligning with feedback from our 2019 community survey we continue to build capacity to plan another in-person patient gathering, and as such 25% of funds raised ($17,190) have been put aside for this purpose. Although this may not be able to be facilitated for some time, recognising that this a high priority for the community, and will be one of our largest upcoming investments, we continue to work towards this.
• The remaining 25% ($17,190) has been allocated to enable support activities. This will continue to include our Support Grant Program and will allow opportunities to explore more ways that we can support and advocate for people with FOP and their families.
• Because of the generosity and ongoing work by volunteers and supporters, it has not been required to allocate donated funds from this financial year towards administration of the charity. Planning in previous years has enabled sufficient financial reserve to cover our ongoing operational costs, which we continue to minimise as much as possible in order to be sure that every contribution goes to support people with FOP and their fight for a cure.

Thank you for your support during the 2020/2021 financial year. Every contribution to FOP Australia – small and large, financial and non-financial – is very, very appreciated.