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.
COVID-19 information for people with FOP
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.
Support Grant Program – Round 2 Open for applications
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.
This round of grants is now open and will close on the 31st of May 2020.
Printable copies of the application form are attached here, and can be sent back to info@fopaustralia.org marked CONFIDENTIAL in the subject heading. As we understand some people may have limited access to printing and scanning facilities we are also trialing an online application form, which is accessible here using the password Grant1.
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:
- Dr Felicity Collins, Geneticist, Sydney Children’ Health Network
- Mrs Georgie Hyder, Occupational Therapist, Central and Northern Adelaide Health Service
- Ms Michelle Davis, Executive Director, International FOP Association
The returning officer for this round of grants will be Jada Carr assisted by Lydia Scott.
Jada Carr 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. For this round of grants Jada will be assisted by Lydia Scott. All applications will be confidential and only accessed by Jada and Lydia.
If you have any questions about the program please do not hesitate to email us at info@fopaustralia.org
FOP Australia Newsletter – March 2020
We are pleased to present our first newsletter for 2020, read it here !!
Find out about:
#Sockfie4FOP #FunFeet4FOP and our campaign for FOP Awareness Day on April 23
How to roll overseas with a wheelchair by Ollie Collins
Support Grant Program
and more!!
FOP Awareness Day April 23 2020
#FunFeet4FOP #Sockfie4FOP
Join us on FOP Awareness Day on April 23 by showing us your #FunFeet4FOP.
This year we are selling #Sockfie4FOP for $10 + postage. Socks are one size fits all (even for your furry friends)
Purchase your socks and upload your picture to social media using #FunFeet4FOP and #Sockfie4FOP and help us to raise awareness of Fibrodysplasia Ossificans Progressiva.
Don’t have a pair of FOP socks, get involved by wearing your craziest socks!
Support people with FOP for the cost of a coffee per week!
Happy new year! Make this year a year that you make a difference to the future of people living with FOP by joining the FOP Australia Coffee Club.
The FOP Australia Coffee Club is a planned giving program where you commit to give just $5 for each week of the year towards research and support activities to improve the lives of people living with Fibrodysplasia Ossificans Progressiva. In just a few clicks you can sign up online here for your donations to be deducted automatically each month in 2020. Donations are tax deductible and receipts will be issued automatically each time.
As a thank you for your generosity, after you sign up you will receive one of our popular reusable FOP Australia Eco-Cups! You will also receive thank you notes throughout the year with updates to show what your donations help achieve.
Please note:
– Secure online payment facility is provided by Stripe. Payment details are secure and are not viewed or stored by FOP Australia.
– Recurring donations of any amount can also be set up any time through our GiveNow facility
Manual Coffee Club forms are also available upon request through info@fopaustralia.org if preferred.
– FOP Australia Eco-Cups are also available for individual sale online here
Join here now and make a difference this year, in less time than it takes to make a cuppa!
December Newsletter – Tyson’s Disco, AGM Update, Christmas Appeal and More
We are pleased to present our final newsletter for 2019 in our December newsletter
Find out about:
Tyson’s Disco
FY 18/19 AGM Update
Support Grant Program
and more!!
Thank you for your continued support in 2019.
FOP Australia 2019 Christmas Appeal
Help support people with FOP in Australia and New Zealand and their fight for a cure by donating to our Christmas Appeal.
Donations of all sizes are warmly appreciated. All donations over $2 are tax deductible with receipts issued automatically.
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Annual Report 2018/2019
FOP Australia are proud to release the Annual Report for financial year 2018/19 which was presented to members at FOP Australia’s Annual General Meeting on October 29th.
We are pleased to announce that due to a overwhelming successful fundraising year we have been able to donate $75,000 to research, with $70,000 going to the International FOP Association (IFOPA) and $5,000 to the Shore Lab at the University of Pennsylvania. This would not have been possible without the ongoing support of our community.
Although we are incredibly proud of the contribution to FOP research, this year the board has also reflected upon how we can fulfill the organisation’s mission to also provide support to people with FOP and their families. During the 2018/19 year the Support Grant Program was prepared for launch, thanks to the help of our independent selection and advisory panel: Michelle Davis from IFOPA, Dr Felicity Collins and occupational therapist Georgie Hyder. This has been launched since the end of the 2018/19 financial year, so please stay tuned for further updates.
This year has seen several families in our region face a new diagnosis of FOP. As we welcome them to FOP Australia, this highlights the critical importance of expediting the work towards a cure, and of supporting each other through a disease that is poorly understood.
Also this year we initiated our first FOP Australia and New Zealand Community Survey. It was an important step for the Board to receive direct feedback on key issues and strategic priorities. The survey was sent to all members of the Australia and NZ families and patient group. We had 31 people respond with further details provided in our annual report. Thank you to everyone who participated in the survey, it helped us to prioritise our goals for the future and gave us a benchmark to work with.
You can read more about what we have achieved in the report, which includes our financial statements and independent auditor’s report, and ideas for how you can help.
Thank you again for your support in 2018/2019, and we look forward to sharing more exciting news with you soon.
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