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 info@fopaustralia.org


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 info@fopaustralia.org.


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 linda.bradbury@qut.edu.au

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 info@fopaustralia.org.


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 info@fopaustralia.org. Thank you for helping us with our 2017 FOP Awareness Day campaign and to #cureFOP !

 


Fundraising Frenzy!

Australia dances, runs and decorates nails to #cureFOP

Because of your support, FOP Australia raised over $5000 for FOP research during February and March. This was the result of a diverse range of activities all over the country, and contributions from hundreds of people. Every contribution, whatever size, is hugely appreciated as a sign of support for those with FOP.

  • Kicking off with the first fundraiser of 2017, Tyson Stanley and his mates organised a superhero themed disco in Somerville on February 11. ‘Tyso and Gypsy’s Marvel-ous Marvel vs DC disco’ raised $538. Thank you Tyson and team!
  • Shan Carty ran an online Jamberry fundraiser during February, including a Facebook party on Rare Disease Day to connect our supporters across the country. Thank you for helping Shan raise $941, meeting the aim of beating last year’s total of $902!
  • A fundraiser that everyone in Australia and NZ can get behind is 2017/18 Entertainment Books. Opening in March, by the end of the month this had already raised $114 online, with sales open for several months yet. Thank you Amy Ellingworth and Lara Boniface for their ongoing work on this fundraiser.
  • FOP Australia has also been very lucky to receive over $600 through direct donations using the ‘Donate Now’ buttons on our website and Facebook page. We were particularly excited to see our first regular monthly donation set up through this facility!
  • A lovely surprise was the $970 raised by the Peninsula City Church in Victoria at a quiz night on the 17th March. Our treasurer Talia Wilson attended on behalf of the FOP Australia board to thank everyone for their contributions.
  • The 12km Bay-City fun run was the first FOP Australia fundraiser in South Australia. $2010 was donated to our team of eight runners and walkers who completed the 12km course in t-shirts promoting our organisation. If there is a fun run near you that you would like to use as a way to support FOP Australia, we would love to help you!

The Bay-City fun run was also the first time we have used our new ‘mycause’ platform. The mycause platform makes it easy for our supporters to fundraise using events or ideas of any size, whether it raises $20 or $20,000! As well as making it easier to manage funds for large events, it can also help people create gift cards, accept donations for FOP in lieu of birthday/anniversary gifts, or support individual pledges. This is an exciting new development for FOP Australia to help us expand our range and type of fundraising activities. If you have ideas or questions about mycause, please get in touch at info@fopaustralia.org.

Remember, all donations over $2 are tax deductible, and our ‘Donate Now’ and mycause facilities automatically generate and email tax receipts directly.

As outlined in our 2016/17 strategic plan we aim to make a $10,000 contribution to the global FOP research effort at the end of this financial year through the International FOP Association. IFOPA ensure that our hard-earned and highly valued donations are directed to support high-quality research necessary to further the fight to cure FOP. So far we are on track to meet this goal, THANK YOU!

Photos clockwise from top of map: Jamberry fundraiser afternoon tea in Broome WA, Entertainment Book image, Tyson Stanley with family and friends at his disco in Somerville Victoria, the Bay-City team prepare in Adelaide, SA.


Entertainment Books 2017/2018: Online fundraiser

Buy your entertainment books online here and 20% will go to FOP Australia!

Save thousands and support FOP research at the same time!

No matter where you live in Australia or New Zealand (or even Bali!), you can purchase an Entertainment Book for a major city near you and benefit from the wide range of discounts for restaurants, travel, gifts and more! They also make a great present.

If you buy online you can choose to have a hard copy book sent to you, or to buy an electronic version. We will also be selling some hard copies at selected sites, including Broome (for Perth/Bali and Darwin books) and Brisbane. To find out how to get your hard copy (or if you can help by selling hard copies in your town through your business, school or community for FOP Australia) contact us.

Check out all the different locations you can buy Entertainment Books for on the list below. There is one near you!

Australia

Adelaide
Brisbane, Sunshine Coast and surrounds
Cairns, Palm Cove and Port Douglas
Canberra
Darwin
Geelong and Ballarat
Gold Coast and Northern NSW
Hobart and surrounds
Launceston, North West Tasmania and surrounds
Melbourne
NSW South Coast
Newcastle, Central Coast and Hunter
Perth and Bali
Sydney and surrounds
Sydney Greater West
Townsville

New Zealand

Auckland
Christchurch,Canterbury and Nelson
Dunedin, Invercargill and Queenstown
Waikato and Bay of Plenty
Wellington and Manawatu


Bay-City Fun Run 19th March (Adelaide)

The Bay-City fun run turns the traditional Adelaide City-Bay on its head, and sees thousands of South Australians walk or run 4.5km or 12km  from Glenelg to Adelaide Oval on 19th March.

This year FOP Australia will be represented by a team of dedicated fundraisers. Anyone is welcome to join our team, to run/walk 4.5km or 12km. Running experience and skill are not required, just a willingness to give it a go and raise awareness and money for a cure for FOP!

Event information is available online at the Bay-City website, where you can also register to join us by selecting FOP Australia as your team.

To support our runners in the Bay-City please donate online on our mycause page for this event here .

If you are interested in raising money for FOP Australia through a running event, we would love to support you! Please contact us at info@fopaustralia.org.