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In our February Newsletter!
Rare Disease Day
Support Grant PRogram
Quiz Night – Save the Date!
IFOPA’s advocacy Series
Team Keely Fundraiser
Read more at this link!!
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
Thank you for your support in 2020! You can read all the FOP Australia and New Zealand news in our December Newsletter
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.
FOP Australia are excited to support the launch of an exciting new research program in to potential treatments for Fibrodysplasia Ossificans Progressiva.
Because FOP is caused by a single gene mutation, therapies that can act at the genetic level to edit, silence or “turn off” the affected gene hold a lot of potential promise. But research into these therapies is in very early stages, and a lot of work is still needed.
The International FOP Association have announced that the first research grant for gene therapy will go to the University of Massachusetts, and because of the generous donations of people in Australia and New Zealand, we are proud to pass on $12,500AUD raised during the 2019/20 financial year to help get this exciting and important program off the ground.
On August 27th 2020, IFOPA hosted an online presentation explaining the potential for this research program, shared below:
Another $12,500AUD from the 2019/20 financial year will also go to the IFOPA ‘ACT (Accelerate Cures and Treatments) for FOP Grant Program’, a competitive research grant program facilitated by IFOPA to identify and support projects from all around the globe that can help develop potential therapies for this disease. Thank you to everyone who has continued to support FOP Australia and people living with FOP in Australia and New Zealand during this challenging year – your ongoing generosity is amazing, humbling, and deeply appreciated.
Learn about other key milestones in the global research effort on our updated Research page.
As part of our goal to support people living with Fibrodysplasia Ossificans Progressiva, FOP Australia is proud to launch the second round of our Support Grant Program to enable people with FOP (or their direct caregivers) to apply for direct financial support for items or activities that help them live with FOP.
The third round of grants will open on the 1st September will close on the 30th of September 2020.
Details of how to apply will be sent to people with FOP and their caregivers that are registered with FOP Australia (so check at info@fopaustralia.org to make sure we have correct contact details!).
Please read the full Terms Of Reference before applying.
We are grateful to our independent panel of experts who will assess and rank the applications:
The returning officer for this round of grants will be Jada Carr. We are very grateful to Jada Carr, who has volunteered her time to assist in this process which will remove the issue of the returning officer and their immediate family being unable to apply for a grant. All applications will be confidential and only accessed by Jada.
If you have any questions about the program please do not hesitate to email us at info@fopaustralia.org
Picture: Cody Wilson kindly agreed to share this photo of the ramp that was built using funds from the first round of support grants.
Read all the news from the FOP community of Australia and New Zealand here.
Newsletters are sent to members and supporters four times each year – send us an email to subscribe to receive the next edition.
The International Clinical Council on FOP recently released an update to their Coronavirus (COVID-19) Precautions for FOP Families.
The major updates include: testing for COVID, return to work/school and utility of masks.
Read the precautions at https://www.ifopa.org/coronavirus_update_7_17.