Annual Report 2018/2019

Published: November 5, 2019  ~   0

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.

2019 Annual General Meeting

Published: October 8, 2019  ~   0

July 2019 Newsletter: Fundraising news, survey results, grant program launch and more!

Published: July 30, 2019  ~   0

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.

Community Survey Results

Published: July 27, 2019  ~   0

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:

  1. Advocating for access to a treatment when available– 87% ranked this as the number one priority
  2. Build and maintain links with academic centres and pharmaceutical companies to bring up to date trial and drug information/opportunities to the FOP community – 84% ranked this as the second priority
  3. Connection with IFOPA and other international FOP communities was ranked the third highest with 68%

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.

Meet Brooke

Published: April 21, 2019  ~   0

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)

First grant application successful!

Published: April 3, 2019  ~   0

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.

International Clinical Council on FOP release updated edition of treatment guidelines

Published: March 11, 2019  ~   0

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.

February 2019 Newsletter: Rare Disease Day, merchandise, IFOPA Biobank, and more!

Published: February 25, 2019  ~   0

Check out our new-look newsletter here, out just in time for Rare Disease Day on February 28th!

Includes updates on:

  • IFOPA Biobank
  • Rare Disease Day
  • New online merchandise
  • Our first Bunnings BBQ
  • How to join our fundraising co-ordinating team

Have you got a story for our next edition? Contact us at info@fopaustralia.org – we would love to hear from you.

December 2018 newsletter: RVA summit, new fundraisers and more!

Published: December 31, 2018  ~   0

2018 was a bumper year for FOP Australia, with your support leading the best start to a fundraising year that we have had so far! Read about some of the activities the happened in the second half of 2018 here:

  • Rare Voices Australia: FOP voices at the national 2018 summit
  • Advocacy strategy: Looking ahead towards getting access to a cure
  • Share your NDIS experiences: Do you have advice for navigating the system?
  • Fundraising fun: Thanks for a great start to the 2018/19 FY!

First notice of AGM and call for director nominations – 2018

Published: October 12, 2018  ~   0
FOP Australia is pleased to announce the tentative date and location of our Annual General Meeting along with Board Director Nominations.
Date: Tuesday 13th of November 2018

Location: The University of Adelaide, North Terrace  SA 5005 – Room to be confirmed

In person (Adelaide)

WA time: 5:00pm

NT time: 6:30pm

QLD time: 7:00pm

SA time: 7:30pm

VIC/NSW/TAS/ACT time: 8:00pm

We will be using ZOOM as a videoconferencing tool, you can access this via your desktop, ipad, mobile or you may dial in. Details will be sent on how to access the meeting closer to the date.

Please register for the AGM at the following link, tickets are available for video conference – ZOOM either via phone or computer or in person

http://tix.yt/fopausagm2018

Director Nominations are required to be submitted no later than Friday 19th of October 2018 5:00pm AEST. All nominating directors must provide the attached form and CV as required.

Proxy forms, AGM agenda, and director nomination information will be circulated no later than 21 days prior to the proposed  board meeting date
Any questions regarding the AGM and nominations are to be directed to the secretary Brooke Scott at info@fopaustralia.org or on 0422 511 797