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.
Brooke’s FOP Journey…..
Most stories about Fibrodysplasia Ossificans Progressiva start from a young age, my story is different.
FOP for me, is only a relatively new “friend” since 2009 when I was diagnosed at the age of 29. My journey up to this date is different to many of the FOP stories for which I am very grateful.
I led a fairly normal childhood, I participated in sports such as netball and horse riding and as a teenager tried ice skating and ice hockey (which I hated!) Looking back there may have been signs that my FOP “Friend” was with me, such as my noticeable walk which included fast small steps with my head down, and my stiff neck, but as I have normal toes and no known flare ups as a child FOP went undiagnosed.
From my early 20’s when I first noticed lower back pain I found myself in the public and private hospital system. I was moved around from doctor to doctor all unsure of what exactly was the problem. It was clear that I had something going on but no one was quite sure what to do about it which lead to many years of misdiagnoses and unnecessary testing.
In 2009 I had what I now know as a significant flare up in my neck. The lump was biopsied in 5 different places and at the same time I had a CT on my neck, abdomen and pelvis. It was during the investigation of the CT that the radiologist suggested that maybe it was FOP, however, that would be rare given my age and my normal toes. After this I had genetic testing where the doctor also said it was highly unlikely it was FOP as he has seen a patient previously with the condition, the results came back and confirmed that indeed I had FOP but a variant form which had only been reported in one other patient at the time.
Since that time I have learnt what living with a progressive rare disease means, it is often very isolating, being diagnosed as an adult at a time when friends are planning their lives was and is a hard thing to cope with. The “P” in FOP stands for progressiva, meaning the condition will progress, I don’t know when but it will. Not knowing when and having this out of your control is extremely hard to deal with. One thing you don’t get told when you are diagnosed is that you will get a new family, your rare disease family. For me my family is spread far and wide, I have not met most of my family in person but they are always there for support and guidance on any topic without judgement, without them this journey would be immeasurably hard. There are only 17 people in Australia and 2 in New Zealand that have FOP, we are a small but close knit group who rely on each other for support, I am grateful for their help in times of need.
I am very lucky given my late diagnoses and unnecessary invasive procedures to be reasonably mobile. I am married to my husband Brendan and we live with our 2 pets Penny and Gracie. I currently work 4 days a week and I am a director of FOP Australia the charity founded to help people in Australia and New Zealand. I recently completed a Diploma of Business (Governance) under part scholarship from the Women’s Leadership Institute Australia and Institute of Community Directors Australia. I hope the knowledge that I have gained from this course will help FOP Australia and our community as we move forward towards a treatment for FOP.
Parents Dean and Jennifer at Brooke’s graduation (2009) – 7 months prior to diagnosis
Brendan, Rach, Brooke and Julie in Sydney (2010)
With Fred Kaplan at The University of Pennsylvania (2014)
Check out our latest quarterly online newsletter for news about:
…. and more! Please contact us if you have a contribution for a future edition.
FOP Australia have succeeded in their first ever application for a government grant in the latest round of The Department of Social Services Volunteer Grants.
The guidelines allowed us an opportunity to apply for funds to access Zoom videoconferencing software so that we can better communicate with our members at the Annual General Meeting, communicate more efficiently at board meetings, and hold information sessions for our community. We did not want to use donated funds for this purpose, so this gives us a great new opportunities to work more efficiently and communicate better, without compromising funds for our organisation’s main goals.
If there is a topic you would like to have an online video information session about, please suggest it to us at info@fopaustralia.org.
The International Clinical Council of FOP and consultants have released a new edition of The Medical Management of Fibrodysplasia Ossificans Progressiva: Current Treatment Considerations.
In the accompanying editorial, corresponding authors Prof Fred Kaplan and Dr Robert Pignolo emphasise that “this document reflects the authors’ experience and opinions on the various topics and classes of symptom-modifying medications, and is meant only as a guide to this area of therapeutics for an ultra-rare condition for which evidence-based information is limited”.
This replaces the previous edition released in 2011, which has been a valuable resource for families and clinicians around the world. The authors note that “With ongoing clinical trials and additional ones on the horizon, we anticipate that this document will be updated annually – more frequently if needed.”
FOP Australia are very grateful for the work of the ICC, and will be sending a copy of the new edition directly to all the FOP families and clinicians registered with us over the coming days. Please note that this document can also be accessed by the permanent ‘Medical Treatment Guidelines’ link visible at the top of every page of this website.
Order your 2019/2020 Entertainment Books through FOP Australia now to save on travel, accomodation, meals and shopping!
Available in digital and hard copy formats, the Entertainment Books are available for regions around Australia and New Zealand. And there’s even a bargain $40 Bali edition this year which will save hundreds on your holiday!
Share this link with family and friends to help us raise money to support people with FOP: http://www.entbook.com.au/91408j5
Find an Entertainment Book for your area:
Check out our new-look newsletter here, out just in time for Rare Disease Day on February 28th!
Includes updates on:
Have you got a story for our next edition? Contact us at info@fopaustralia.org – we would love to hear from you.