Catch up on the latest news from FOP Australia in our July newsletter:
In this edition….
– Fundraising: Thank you for making 2018/19 FOP Australia’s best fundraising year ever!
– Community survey: results and actions
– Support grant program: first grant round now open
… and more!
Missing out on your FOP Australia newsletters? Join/renew as a member here.
It has been a huge year for fundraising with FOP Australia. Our financial year total exceeded our goals and filled our hearts, the 2018/19 financial year total coming to a whopping $85,346.89. Not only does fundraising increase FOP Australia’s visibility within the wider community but it allows us to make donations toward research, in the hope for a cure for this debilitating disease.
It is with great pleasure that we announce, in keeping with our set KPI’s for the 2018/19 financial year the allocation of raised funds will go as follows:
1). $75,000 to be donated to research. FOP Australia will be meeting with IFOPA to determine how our research funds can be best used to help further progress towards a treatment.
2). $9,600 has been allocated to support activities including activities such as the future patient gathering.
FOP Australia has received many donations, often unexpected, through various fundraising methods throughout the country. It is with gratitude that we thank the Collins family who raised over $14,000 for FOP Australia in the Bridge to Brisbane Run. Also a big thank you to all involved in the Annual Trivia Night in Mornington, Victoria. It was once again a huge success raising $9,612.80, we look forward to continuing it again in 2020. Another big thank you goes to the ladies from the Kimberley Rural Ladies Lunch. A donation of $5,000 was made to FOP Australia at their annual lunch and was received with gratitude.
We would also like to thank every individual, every business, every family that has raised funds for FOP Australia, including those who do so by making monthly donations via one of our ongoing programs such as; the coffee club, Entertainment Books, Bright Star Kids or by simply becoming a member of FOP Australia.
Thank you to everyone who participated in our first FOP Australia and New Zealand Community Survey. The survey was sent to all members of the Australia and NZ families and patient group. Pleasingly we had 31 people respond and now have some concrete insights, feedback and data to help inform board activities.
The top three strategic priorities:
We shared the concept of working together to develop a patient family gathering within the next five years. It is clear from your feedback that this is something of particular importance and value to people with FOP. We will be sharing more ideas of how we could start to plan for this and will be asking for volunteers to get actively involved through joining a working group.
We were delighted to hear how much you agreed that the information you receive through FOP Australia is informative (94% agreed) and relevant (97% agreed). Facebook is the most followed social media platform and our quarterly newsletter, website (fopaustralia.org), Facebook and email announcements is how the majority of you prefer to receive news/announcements.
We have opportunities to improve the communities understanding of when you should reach out to FOP Australia, who you could get in touch with and how you would do this. As an immediate first step we have updated our online board member profiles which should help with this.
Continuing to raise awareness, fundraise, advocate with key members of the communities in which we live remain key to our success more broadly. Many of you in the survey expressed you own personal interest to play your part with these. We have added a page on our website to help you create a fundraiser, and you can find out about ongoing fundraising activities as well. We will continue to try to make it easier for you to know how to get involved and support you in any way as we continue to advocate for treatment when available and building our relationship with the broader international FOP community including drug companies.
Feedback from the survey has informed our strategic planning for 2019/2020, directly impacting our Key Performance Indicators chosen for this financial year. We will share more from the survey and actions at our Annual General Meeting in October.
As part of our goal to support people living with Fibrodysplasia Ossificans Progressiva, FOP Australia are excited to announce the launch of the Support Grant Program. This pilot program will enable people with FOP (or their direct caregivers) to apply for direct financial support for items or activities that help them live with FOP.
Although 90% of of the money FOP Australia has raised so far as gone to research, we have also set aside money to provide direct support to people living with FOP. In keeping with the KPIs set for the previous 2 financial years, FOP Australia allocated $7000($3000 from 2016/17 and $4000 from 2017/18) raised to be set aside for this purpose. During this time we have been working with experienced grant providers to develop our Support Grant Program, to ensure that there is a fair and independent process to allocate grant funds.
We are grateful for the selection panel members who have donated their time to this program:
Each grant can be for up to $1000, and applications are accepted for anything that will improve the life of someone with FOP. More details about the program, including the full Terms of Reference, are available here. The first round of applications will open on the 29th July 2019, with closing date on 30th August 2019. Application forms will be sent directly to people with FOP and their caregivers, via the contact details they have registered with FOP Australia.
The first round of grants will be considered to be a trial, and afterwards, the board will review the process and feedback received to determine the future of the program and/or other support programs.