CharityBuy: Save, shop and #cureFOP!

We are excited to launch our new partnership with CharityBuy, where you can shop from a huge range of stores online and make your purchases work for FOP Australia!

All you need to do is click on the link to your chosen online store on the CharityBuy page, and start shopping!

The CharityBuy page tells you how much of your purchase will go to FOP Australia, and also includes special offers. So not only can you support those with FOP at no extra cost to you, you could actually save money!

Woolworths, David Jones, Amcal, Spotlight, Bonds, Angus and Robertson, Aussie Farmers Direct, Australia Geographic, Avis, Bed Bath and Table, Berlei, Bonds, Betta, Bobbi Brown, Booktopia, Budget, CAT workwear, Chemist Warehouse, Clarks, Clinique, David Lawrence, Dotti, Edible Blooms, Esprit, Estee Lauder, Etsy, Expedia, Freedom, Hard Yakka, Interflora, Jo Mercer, Lorna Jane, Microsoft, Sportscraft, Sony, Webjet, Zanui…. These are just SOME of the hundreds of online stores that will donate a percentage of your Xmas shopping to FOP Australia if you use this CharityBuy link  (or select us as your chosen charity from the homepage)

The huge range offers you lots of opportunities to help FOP Australia just by doing your normal shopping all year round, or to help you feel good about buying some extra treats in time for Christmas!

First notice of AGM and Call for Director Nominations

FOP Australia is pleased to announce the tentative date and location of our Annual General Meeting along with a call for Board Director Nominations.

Date: Thursday 14th December 2017

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


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/computer or in person

Director Nominations are required to be submitted no later than Wednesday 22nd of November 2017 5:00pm AEST. All nominating directors must complete the FOP AUSTRALIA_Director Nomination_Dec 17 form and provide a CV as required.

Proxy forms, AGM agenda, and Director Nomination information will be circulated to all members no later than 21 days prior to the proposed AGM meeting date.

Any questions regarding the AGM or nominations are to be directed to the secretary Brooke Scott at or on 0422 511 797

We look forward to sharing the achievements of the 2016/2017 financial year with you.


News from the 2017 Drug Development Forum

The International Fibrodysplasia Ossificans Progressiva Association and FOP Italia 2017 Drug Development Forum was held in Alghero, Italy on the 12th and 13th of October. Over 180 people attended, including representatives from pharmaceutical companies, academic research centres and community organisations all around the world. FOP Australia congratulate our allies co-hosts IFOPA FOP Italia on a successful event at this pivotal time for the FOP community, and are excited to bring you the following news from the forum:


Drug development and clinical trials
  • Clementia announced plans for phase III trial of palovarotene, beginning enrolment 2017. Planned for 18 sites across 14 countries, including Australia. Trial details are now online at The trial is still going through regulatory and planning stages in Australia – FOP Australia will keep you informed as more news becomes available.
  • Clementia are preparing for public release of preliminary results from the phase II open label extension study of palovarotene.
  • Regeneron announced further details of their phase 2 trial of anti-activinA REGN2477, planned to start enrolling in 2017! Currently no plans to enrol in Australia but FOP Australia will stay in touch for future opportunities.
  • Professor Toguchida of Kyoto confirmed details of rapamycin trial in Japan planning to enrol 20 people with FOP at 4 sites within Japan. We look forward to results to help us learn more about the role of mTOR inhibition in potential FOP therapy.
  • The potential for further assessment of saracatinib (based on foundational research), and of imatinib (based on case studies) was also discussed.


The start of the era of clinical trials in FOP is exciting, but also challenging for the international community. Like many rare diseases, there is limited capacity for the number of patients that can be enrolled in trials and studies need to be designed carefully to make sure the maximum possible benefit is gained from every person’s participation. The collaboration and commitment of the academic centres and companies is very encouraging in this regard, as demonstrated by the cooperation at the IFOPA Drug Development Forum where the need for responsible trial design was a recurring theme.


Another challenge in the era of clinical trials is ensuring people with FOP have the appropriate information to make decisions about whether they will participate in a trial. This has been identified by the IFOPA International Presidents’ Council and Research Committee as a current priority for the organisation.


Other developments in clinical care and monitoring
  • The potential for PET scans in identifying sites of bone formation early in the flare process, as described by researcher from Amsterdam at the 2016 Boston DDF, has been recognised by the inclusion of this type of scan in the Regeneron trial.
  • Dr Paul Yu at Harvard presented his work in mice with FOP that shows that voluntary exercise was associated with less bone development. Caution is required in applying this to humans, but it may be supportive of longstanding recommendations by international clinical leaders and many reports from those living with FOP that there may be some longterm benefits in optimising muscle function from gentle exercise.
  • Work by Dr Ben Levi at the University of Michigan has begun exploring the role of specialised ultrasound in very early detection of bone formation. This raises the potential of a more accessible, radiation-free modality for clinical monitoring, if supported by further research.
  • The 2nd annual report from the FOP Patient Registry was previewed in a poster session. The information gained from the registry will be a key component of future applications for drug approval by regulatory bodies, and crucial for future interpretation of drug trials. But it also describes important issue with the current clinical journey of FOP patients, including over half of patients receiving an incorrect diagnosis. This highlights the need for increased physician awareness of FOP to improve clinical care. This is recognised as a goal by IFOPA and in the current FOP Australia strategic plan.
  • The DDF Q+A sessions and patient panel highlighted other clinical issues for the researchers present, to help them ensure work considers factors most important to those living with FOP. This included the frequent issues of pain management and fatigue.
  • Professor Kaplan announced the formation of the International Clinical Council for FOP, a group of experts who will provide consensus and guidance. Queensland Univeristy of Technology’s Professor Matt Brown is a member of this group and attended the ICC meeting held following the DDF.


Alongside development of therapeutics there are several key areas of ongoing research that will need to guide clinical management of FOP, including the ongoing search for biomarkers to monitor progress and drug effect. This has been acknowledged at the forum as a priority for future study.


Foundational science
  • Four 2017 IFOPA Competitive Research Grant winners were announced from a highly competitive field. This included a collaborative project between Dr Ed Hsiao of University of California, San Francisco and Dr Pam Yelick, Tuffs University on interrogating new FOP therapies using an in vivo zebrafish model. FOP Australia is very proud to sponsor this project which will not only learn more about specific drugs, but also enable a new way to safely understand other therapies in future studies as well.
  • Other CRG winners include Dr Jay Groppe’s (Texas) innovative work on novel ways to stop new bone growth by destabilising the ALK2 receptor, analysis of ALK2 inhibitors by Dr Dan Perrien (Vanderbilt), and muscle regeneration in FOP Dr Yuji Mishina and Dr Ben Levi of Michigan
  • Dr Eileen Shore from the University of Pennsylvania provided a detailed updated to the IFOPA research committee on the broad range of FOP-related research in her lab. This including many upcoming publications on understanding why and how new bone develops in FOP, and identifying targets for inhibiting this process.
  • The role of macrophages in new bone development continues to be explored and researchers from many centres shared information about how the immune system may be involved in FOP.
  • Other topics of foundational science presentations and discussion included ALK2 inhibition, BMP signalling pathways, and the role of progenitor cells andthe microenvironment in bone formation.


Associated meetings

To make the most of the opportunity to meet in person, meetings of the IFOPA International Presidents’ Council, the International Clinical Council and IFOPA Research Committee were held in Alghero, all attended by representatives from Australia. The meeting also provided an opportunity to share ideas and learnings with other community organisations, including many useful ideas for FOP Australia from our international friends on how to continue to grow and achieve our goals of supporting global FOP research and our local FOP community.


Notes provided by Dr Lydia Scott, chairperson and FOP Australia representative at the forum.
Disclosures: No disclosures or conflicts of interest to declare regarding pharmaceutical companies or involvement with participating academic centres. Accomodation was subsided by IFOPA. No FOP Australia funds were used to attend the forum.


Representatives from community organisations from 14 countries at the 2017 IFOPA International Presidents’ Council meeting.

Enrico Cristoforetti from co-hosts FOP Italia giving opening remarks of the IFOPA DDF to a packed room.

Two key contributors to the discovery of the FOP gene, Australia’s Professor Matt Brown from Queensland University of Technology and Professor Fred Kaplan from the University of Pennsylvania reunite at the International Clinical Council meeting in Alghero, Italy.

Chairperson Dr Lydia Scott congratulates A/Prof Ed Hsiao and Prof Pam Yelick on their IFOPA Competitive Research Grant, proudly sponsored by FOP Australia.

Neil Mantick explains the latest news from the FOP Connection Registry at the 2017 DDF.

Stelios Tsigkos the European Medicines Agency and Professor Fred Kaplan from University of Pennsylvania join a panel session to discuss presentations of the upcoming clinical trials: Donna Grogan (Clementia), Xiaobing Qian (Regeneron) and Professor Toguchida (University of Kyoto).

FOP Australia proudly support ground breaking research: 2017 IFOPA Competitive Research Grant winners

FOP Australia support ground breaking international FOP research through the IFOPA Competitive Research Grant program. We are very proud to sponsor a new project by Associate Professor Ed Hsiao at University of San Francisco, and Professor Pamela Yelick at Tuffs University looking at ‘Interrogating new therapeutic targets for human FOP’ . This project will not only look investigate new treatments, but in doing so will also develop a new zebra fish FOP model which will be a helpful tool for future in vivo FOP research.

Many FOP Australia supporters will know of A/Prof Hsiao’s clinical and research FOP work, including his role as a primary investigator in clinical trials. In the spirit of collaboration so crucial for rare disease research, he formed a partnership with Prof Yelick following the 2016 Drug Development Forum, both recognising the potential for new in vivo models to test potential FOP treatments.

A/Prof Hsiao and Prof Yelick’s collaboration was one of four CRG winners announced from a highly competitive field at the IFOPA Drug Development Forum on the 14th October. The CRG program is designed to accelerate progress towards transformative FOP therapies, with applications from researchers all over the world reviewed by an expert independent scientific advisory board. Supporting this process enables FOP Australia to make sure that your donations are used for maximum effect in the fight to #cureFOP.

Thank you for your ongoing support of FOP Australia and crucial work by researchers such as A/Prof Hsiao and Prof Yelick. We look forward to keeping you informed of their progress.

FOP Australia chairperson Dr Lydia Scott congratulates A/Prof Ed Hsiao of UCSF and Prof Pam Yelick from Tuffs University, 2017 IFOPA Competitive Research Grant recipients

Title photo: FOP Australia chairperson Lydia Scott  and FOP Friends (UK) chairperson Chris Bedford-Gay congratulate the 2017 IFOPA Competitive Research Grant recipients: Pam Yelick, Ed Hsiao, Yuji Mishina, Ben Levi, Daniel Perrien, and Jay Groppe


FOP Australia Member newsletter issue 3!

Member Newsletter Sept 2017 Issue 3 is out now!

In this issue…

– $30,000AUD donated to FOP research

-2017 FOP Trivia night in Victoria

-Clinicial trial update

-Jarvis joins the bombers
… and more!

If you have news or information to share with the FOP community, or would like to suggest future topics, we would love to hear from you!

All members will receive this by email. If you do not receive your emailed copy of the newsletter within the next week please get in touch by emailing us with your updated contact details at

FOP Australia donates $30,000AUD to #cureFOP!

Because of your support, FOP Australia are proud to announce a donation of $25,000AUD to the International FOP Association to further FOP research. With potential therapies being trialled, now is a critical time in the global research effort and your donations will help make sure that precious opportunities do not get missed.

As we significantly exceeded our fundraising target of $10,000 for IFOPA during the last two quarters of 2016/17, FOP Australia are also donating $5,000AUD to the Shore Lab at the University of Pennsylvania. This will help support their ongoing research into understanding the disease process, which will guide the ongoing search for a cure.

Recognising the need to provide support to the FOP community now, as well as funding research for the future, FOP Australia have also dedicated $3000 from funds raised during the 2016/17 year towards funding support activities. We are currently creating a grant framework so that community members can apply for assistance through a transparent and fair process. We hope to establish this by the end of 2017 so stay tuned!

THANK YOU for making this happen. Thank you for donating, for liking and sharing Facebook posts, running fun runs, competing at quiz nights, decorating nails, buying (and selling!) Entertainment Books, becoming a member, and helping spread the word. We are a small organisation and every bit makes a difference. By digging deep to give your time, money and and effort to #cureFOP, you also give hope to people with FOP. We cant wait to see what we can achieve together in 2017/18!

Join for 2017/2018! Renew online now!

It’s time to renew your membership for the 2017/18 financial year. Anyone is welcomed to join/renew using our quick and easy online form.

By signing as a member for $10 per year you will:
– Show your support for those living with FOP
– Receive regular updates on FOP news
– Hear about the latest fundraisers
– Hear what your donation has helped to do
– Help us shape this new and growing group

Thank you for your support in 2016/17, and for helping us continue to support people with FOP and to work towards a cure. We had a very productive 2016/17 financial year and look forward to sharing our  Annual Report and review of the 2016/2017 Strategic Plan KPIs with you soon.

People living with FOP have lifetime free membership. Free membership is also offered to health professionals in order to help raise their awareness about FOP. If you are eligible for free membership, or have any questions, please contact us at

Palovarotene – Phase 3 Australian Trial Site

As many of you will know, Professor Matt Brown’s group from Queensland University of Technology and Princess Alexandra Hospital (PAH) and Dr Ben Whitehead from Brisbane’s Lady Cilento Children’s Hospital in Brisbane have been acting as the Australian/New Zealand centre for FOP clinical trials, currently with studies of Palovarotene sponsored by Clementia.  Coordinated by Linda Bradbury (nurse practitioner, PAH) this has meant Australian/New Zealand patients have been able to participate in the studies without having to fly to the US, something that previously prevented many of us participating.

Clementia have recently announced that in an interim analysis of what is called a ‘phase 2’ study of Palovarotene that the medication looks to be effective at significantly reducing the amount of new bone that develops during FOP flares.  Importantly the medication also appears pretty safe.   This is extremely exciting and so Clementia have decided to proceed with the definitive ‘phase 3’ study of the medication.  Professor Brown’s group will again be the Australian/New Zealand centre for that study, which will be open to FOP patients age 4 or more years.

The study won’t begin enrolling until towards the end of this year but clearly this is a great opportunity for FOP patients to get access to what at this point looks like it may be the first really effective medication to slow the progression of FOP.

If you have any queries about this, please send them by email to Linda at

Brooke Scott

IPC Representative IFOPA

Secretary FOP Australia

Member Newsletter Issue 2

The second edition of our quarterly newsletter is out now, just in time for FOP Awareness Day on April 23rd!

In this issue…
– FOP Clinical Trial Centre: Prof Matt Brown talks FOP research in Australia
– Fundraising frenzy: Aussies run, dance and decorate nails to #cureFOP
– IFOPA Quality of LIFE Awards: Practical support from our global community
– Your story is a gift to FOP research: The FOP Connection Registry
… and more!

If you have news or information to share with the FOP community, or would like to suggest future topics, we would love to hear from you!

All members will receive this by email. If you do not receive your emailed copy of the newsletter within the next week please get in touch by emailing us with your updated contact details at

FOP Awareness Day – April 23rd

Fibrodysplasia Ossificans Progressiva is one of the most rare and disabling conditions known to medicine, causing muscle/soft tissue to be replaced by bone, leading to progressive and permanent loss of mobility. There is a global research effort looking for a cure, and April 23rd marks the anniversary of the discovery of the FOP gene, a major milestone in this battle. Therefore April 23rd is International FOP Awareness Day.

Although donations are crucial for research to continue,  simply showing support is also important because having a rare disease like FOP can be very isolating. Raising awareness of rare diseases is important so that the community (and our political representatives) know the importance of providing resources for people with rare disease. Increasing awareness of FOP is particularly important to help increase recognition and prompt diagnosis, avoiding harm from unnecessary investigations. So this month we are asking you to show people with FOP that you care and support the effort to #cureFOP by helping us spread the word on April 23rd!

How to help in 1 second:

From now until FOP Awareness Day on 23rd April we will be sharing 16 facts about FOP on our Facebook and Twitter pages – one for every person living with FOP in Australia and New Zealand. We would love you to like/share/retweet our messages.

This month we also want to spread the word further by increasing our Facebook followers… We having over 500 followers now, can you help us reach 1000?If everyone invites at least one friend to follow us, we can do it! Please invite your ‘plus 1’ to our Facebook page today!

How to help in 1 minute:

Other ways to help include using the FOP Awareness Day profile picture and use the hashtag #cureFOP on social media. Use this banner as an email signature or social media cover picture during April to help get the message out to your contacts.

How to help in 10 minutes:

Please take some time to read and share our new profiles at ‘My Life with FOP’ to help others understand how FOP affects peoples’ lives. This website includes many other resources to share including FOP FAQs, treatment guidelines, informative videos, upcoming events, newsletters, how to help fundraise, and links to donate or become a member.

For more:

Read more about FOP Awareness Day activities worldwide from the International FOP Association here. If you have ideas on how you can help FOP Australia increase awareness in your community, we would love to hear from you at Thank you for helping us with our 2017 FOP Awareness Day campaign and to #cureFOP !