FOP Australia is happy to share this year’s annual report and thank everyone who has contributed to the work of this organisation in the last financial year.
The full report is accessible here.
Updated international FOP treatment guidelines
The International Clinical Council on FOP released an updated version of the treatment guidelines in July 2024. This is the first full update since 2019.
Read the International FOP Association summary of updates here.
The full copy of the guidelines is available here, and at the link on the top of every page on our website. We encourage you to share this with your doctors and other clinicians involved in the care of FOP.
TGA approves palovarotene as the first FOP treatment available in Australia
We are excited to share that the Australian Therapeutic Drug Administration has approved the first ever treatment for Fibrodysplasia Ossificans Progressiva!
Palovarotene capsules (Sohonos) have been approved for use in adults and some children (females 8 years of age or older, males 10 years of age or older) who have FOP. This means that palovarotene is now approved for use, though processes for reimbursement and getting supply of the drug will still need to be developed.
If you have FOP, palovarotene may or may not be an option for you – we encourage you to discuss the potential benefits and side effects, and your individual circumstance, with your treating doctor (particularly with clinical trials of other developing drugs currently open for enrolment in Australia and New Zealand; see trial sites listed at https://fopaustralia.org/updated-clinical-trial-resources/).
This announcement is possible because of clinical trials around the world, including Australia, relying on people with FOP undergoing trial and placebo therapy. The studies showed that palovarotene can possibly have some effect on stopping extra bone formation (heterotopic ossification). We would like to acknowledge the generosity and efforts of all the people who participated in these trials, and their families and research teams, for making this milestone possible.
Representatives from FOP Australia and Ipsen will be meeting in the coming days, and we look forward to sharing further posts about this announcement. The TGA listing is publically available at:
https://www.tga.gov.au/resources/artg/394001
*Edited 1/12/23 to emphasise that processes for supply and reimbursement of the drug within Australia are still to be developed*
FY23 Annual Report
FOP Australia are proud to share our Annual Report for 2022/2023. This includes an overview of our achievements and challenges, financial statements, a report from our IFOPA International Presidents’ Council representative, and a summary of the year in medical research.
We are especially to proud to share the news that because of the generosity and support of people throughout Australia and New Zealand, FOP Australia has again been able to allocate funds from FY23 to:
- Supporting the IFOPA In Pursuit of.a Cure campaign for gene therapy research
- Contributing to the IFOPA ACT for FOP competitive research grant program
- Continuing support for the Shore Lab at University of Pennsylvania, and their ongoing foundational science research
- Planning a future Australia/New Zealand patient gathering (for the first time since 2016!)
- Funding the Support Grant Program
- Funding the Oliver Collins Education Grants
- and of course, a small amount (5%) goes towards operational costs to keep our organisation running in accordance with ACNC and other regulatory requirements.
We look forward to the opportunity to discuss this report with members at the Annual General Meeting on Monday 9th October at 8pm AEST. Notice of the AGM has been sent to all members via email (please contact info@fopaustralia.org to confirm your contact details if you are a member who has not yet received this) .
Thank you to everyone who has contributed in any way to the work of our charity to support people with Fibrodysplasia Ossificans Progressiva. Apart from the financial contributions above, we hope that by creating opportunities for connecting people we can foster a supportive network for people with FOP in Australia and New Zealand.
FY22 Annual Report
The FOP Australia Annual Report for the 2021/2022 financial year is now publicly available online our website. This was distributed to all members in December 2022, in anticipation of the Annual General Meeting. We also redistributed the 2020/2021 Annual Report with updates and addendums based on member feedback received last year.
Thanks for taking the time to read about FOP Australia’s activities and achievements. These and all previous Annual Reports are available here.
THANK YOU for your support for the 2020/21 financial year: Fundraising announcement
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.
April 2021 Newsletter: FOP Awareness Day Trivia Night, profiles, and more!
Check out our latest newsletter here for stories about:
- FOP Awareness Day April 23rd: Online Trivia Night
- FOP Awareness Day online information campaign
- Profiles of Brooke and Oliver
- Thank you to fundraiser Rory
Previous newsletters are available here. Make sure you don’t miss out on the latest news by subscribing to future editions – join the mailing list here.
Dean Jamieson – They Called Me Lightning – Book Fundraiser
Dean Jamieson (Father of FOP Australia Chair Brooke Scott) has published his first book “They Called Me Lightning”.
The book is his story starting at the age of sixteen where he left school to chase his dream to be a real-life cowboy. The book describes tales of fear, adventure, survival and growing up whilst working on outback stations in SA and NT in the late 1950’s and early 1960’s.
Part proceeds of the sale of any books will support FOP Australia.
Thank you to Dean for supporting us!!
You can contact Dean and purchase a book at this link or via email to deanwjamieson@yahoo.com
December Newsletter: Thank you, Battery Drive Fundraiser, IFOPA news and more!!
Thank you for your support in 2020! You can read all the FOP Australia and New Zealand news in our December Newsletter
Annual Report FY 19/20
We are pleased to present the FOP Australia Annual Report. for FY 19/20
Although COVID-19 has impacted our fundraising abilities in the first half of 2020, we have been incredibly lucky to raise over $50,000 which has enabled us to donate $25,000 to international research with $12,500 specifically for IFOPA’s new gene therapy program and $12,500 for IFOPA’s ACT for FOP Grant Program.
We are thankful for everyone who has supported us during 2019/20 and helped contribute to this fantastic outcome. We will continue to update the community on the progress of both these programs.
The remaining $25,000 has been allocated to support activities such as the Support Grant Program launched in July 2019 and our next patient gathering.
For FOP Awareness Day in April 2020 we launched the #FunFeet4FOP campaign with colourful rainbow socks. This campaign was a great success with photos received from around Australia and New Zealand and involvement from Ipsen. Thank you to Paul Archer for sourcing and donating the socks to us, to Alison McAlpine for selling many pairs of socks around New Zealand and to all our community that got on board by purchasing socks and sharing pictures on the day.
You can read more about what we have achieved in the report, including our financial statements and independent auditor’s report. Please join us at the AGM on Tuesday 1st of December 2020. Registrations are required at http://tix.yt/fop-australia-agm-1920
I hope that the community will continue to work with us as we aim for the goal for a cure of FOP. Now more than ever it is important for us to band together in order to achieve this.
Thank you for your continued support.
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