Order your 2018/19 Entertainment Books now!

You can now purchase your 2018 | 2019 Entertainment Membership here! Not only will you receive 25 to 50% off and 2-for-1 offers many of the best restaurants, hotels, hire cars, retail shopping and attractions in your area but you’ll be supporting FOP Australia.

PLUS, order now to receive over $150 of bonus Early Bird Offers (hurry, these sell out quickly).

Wherever you live in Australia or New Zealand, there is a book for you! Going on an interstate holiday? Your savings on accomodation or hire cars alone would make this purchase pay for itself… and then you can go out to celebrate (and save more money!).

Queensland
  • Brisbane, Sunshine Coast and Surrounds
  • Townsville
  • Gold Coast and Northern NSW
  • Cairns, Palm Cove and Port Douglas
Victoria
  • Melbourne
  • Geelong and Ballarat
South Australia
  • Adelaide (includes the Hills, Kangaroo Island, Clare Valley, Barossa Valley, McLaren Vale and Victor Harbour)
NSW/ACT
  • Sydney and Surrounds
  • Sydney Greater West
  • Wollongong, The South Coast and Southern Highlands
  • Newcastle, Central Coast and the Hunter
  • Canberra
  • Gold Coast and Northern NSW
NT
  • Darwin
Tasmania
  • Hobart and Surrounds
  • Launceston, North West Tasmania and Surrounds
Western Australia
  • Perth (includes Bali)
New Zealand
  • Auckland
  • Waikato and Bay of Plenty
  • Wellington and Manawatu
  • South Island
  • Queenstown
  • Dunedin, Invercargill and Queenstown
International
  • Bali
  • Perth book also includes Bali vouchers

 


Rare Disease Day 2018

International Rare Disease Day takes every year on the last day of February to draw the globe’s attention to rare diseases and their impact on peoples’ lives. It was initially launched by EURORDIS to raise awareness amongst policy makers, public authorities, researchers, health professionals and the general community. On rarediseaseday.org you can find information about the thousands of events happening around the world and see the official Rare Disease Day video (which this year features Alexandre and Antoine from FOP France!).

So what can you do to show your support for people living with Fibrodysplasia Ossificans Progressiva on Rare Disease Day?

  • Raise awareness: Take time to read our ‘My Life with FOP’ page and share the stories of people living with FOP amongst your friends and family to help our voices be heard.
  • Share words of hope: See the growing word cloud on our Facebook page, and add your words of hope.
  • Join FOP Australia: For just $10 per year, show your support all year long and stay in touch with the latest research news and community developments.
  • Support our fundraisers: Buy a reusable Eco-cup for just $15, join our Coffee Club, or even just shop online to support FOP Australia!
  • #ShowYourRare: Download profile pictures, banners, posters, email signatures and more from rarediseaseday.org/downloads .

To learn more about the goals and activities of FOP Australia, visit the ‘About Us’ section and check our our quarterly member newsletters.

 


Meet Jarvis…

Meet Jarvis – a cheeky and funny six year old who loves to sing U2 songs and race around the park.

Jarvis is young and so when suddenly the simple things in life like running, swimming in the pool, or even getting dressed suddenly become harder, naturally he gets frustrated and it’s hard to explain to a child of four that somehow, randomly in the universe of life – he was given a rare disease to live with.

You see, Jarvis has FOP (Fibrodysplasia ossificans progressiva) – one of the rarest, most disabling genetic conditions known to medicine. FOP causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are no other known examples in medicine of one normal organ system turning into another.

FOP affects approximately 800 people around the world, of which, fifteen are confirmed to live in Australia. The biggest indicator of FOP in babies is deformed big toes. Yet medical professionals are largely unaware of this warning sign given the disease’s 1 in 2 million incidence rate.

Jarvis was born in Brisbane, Australia and diagnosed at around 2 years old, nine months after he hit his head on some tiles. His head swelled so much he couldn’t open his eyes. After countless visits to the hospital, neurologist, paediatricians, plastic surgeons, he was finally referred to a geneticist for testing for fibromatosis. No-one even considered FOP.

Around this same time there was a segment on a current affairs program discussing another Australian patient – Zach and his mum Laurin. Lara didn’t see the program but her girlfriends did, and immediately thought Jarvis might share Zach’s condition.

“The next day I contacted the hospital only to be told it wouldn’t be FOP as it is such a rare disease. Unfortunately a lot of people with rare diseases face this initial response”, Lara recalls.

“Eventually, we found a specialist in Australia who was confident from photos I had sent – that Jarvis did indeed have FOP. Genetics Queensland then confirmed this. We felt numb and ignorant as to what this meant for our son” she says.

After working tirelessly to raise funds to allow them to travel with Jarvis to the 2014 Manchester FOP conference, Jarvis was seen by world-renowned FOP experts from the University of Pennsylvania, Drs Kaplan, Pignolo and Shore.

“We have learnt so much from other families on how they deal with their child having FOP and we have made lifelong friends who are providing a great support for us while Jarvis is going through his first flare up”, says Lara.

Watching Jarvis going through his first flare up is extremely difficult for his parents. He’s been suffering since September 2015 with moving masses of muscle in the upper body – restricting movement in his arms and neck.

“We thought we had time, we thought an approved treatment would be here before he had to go through anything”, sighs Lara. But that hasn’t been the case. “Our Jarvis is resilient, he’s funny, he loves U2 with a passion and we believe his love of music is really helping him. He has not let these flare ups stop him one bit. He has had them for nearly five months”, Lara explains.

“FOP is unpredictable and never the same in anyone and with no effective treatment – watching his little body be ravaged by this disease breaks our hearts”, Lara says sadly.

But despite this, the global FOP community has real hope of a treatment or cure – with several drug trials and studies taking place around the world. One of these includes a site in Brisbane under Professor Matt Brown of the Queensland University of Technology.

Jarvis’ experience prompted Lara and other Aussie FOP families to establish Australia’s first FOP not-for-profit organisation, FOP Australia, which has been up and running since May 2015 and hopes to raise much needed funds for medical research and patient support for Australian living with FOP.

“In just a few short months, Jarvis can no longer lift his hands above his head or bend down to pick something off the floor. It’s terrifying”, says Lara.

“We desperately need funding for drug trials, medical research and access to experts” Lara says passionately. “We’ve had so much support from our friends and FOP community so far, and we know there will be more now that FOP Australia is up and running” Lara says hopefully.

Written by inaugural FOP Australia board director Maris Stanley

28 February is Rare Disease Day, when activities are held around the world to show people living with rare conditions to know they have the support of a community behind them. Explore our web page to learn more about life with FOP by reading our other profiles, learn more about the disease, find out about the work and goals of FOP Australia. There are also links to many ways you can contribute to the fight to beat FOP – by supporting our fundraisers, joining our membership, or donating online.  You can also show your support by liking our Facebook page.

Member Newsletter 5 out now!

Our latest quarterly newsletter is available now, just in time for Rare Disease Day on February 28! This newsletter includes suggestions for how you can mark Rare Disease Day by promoting awareness of Fibrodysplasia Ossificans Progressiva, helping FOP Australia, and advocating for those with rare diseases. In this issue:

• Eco-Cups available online now!: Help FOP Australia and the environment!

• ‘A fair go’ for Australians with rare diseases: Voice your support through Rare Voices Australia

• Research news: Learn more about clinical trials through IFOPA

• Join our new fundraising team: Help your community help those with FOP

You can also check out previous newsletters online here. Make sure you receive the FOP Australia newsletters directly by signing up as a member for just $10 per year (or free for health professionals or people living with FOP).


FOP Australia Eco-Cups available online now!

FOP Australia are excited to launch our first official piece of merchandise – our new reusable Eco-Cups are now available for purchase online!

  • Show your support for those living with Fibrodysplasia Ossificans Progressiva!
  • Help save the environment while you help FOP research, by avoiding disposable takeaway cups!
  • Our website address is on the cup, so admirers of your stylish new cup can also learn about FOP!
  • These 350mL  reusable BPA-free cups have a heat-resistant silicon band, tight sealing lid, are microwave friendly and fit standard cup holders

Our new Eco-Cups are the easiest way to help FOP research, show your support, promote FOP information and help the environment! And all before you finish your morning cuppa! For only $15* each this is your chance to show friends and family an easy way that they can support groundbreaking research and people living with FOP. (*plus postage and handling)

Eco-Cups can also be bought in person from FOP Australia board members, if nearby, with no postage costs. We also welcome opportunities to sell these at your local cafe and encourage interested cafes to contact info@fopaustralia.org. As this is our first piece of merchandise we have ordered conservatively, so get in now while stocks last! Or receive a complimentary FOP Australia Eco-Cup when you join our 2019 Coffee Club program.

Larger orders are welcome via email to info@fopaustralia.org. Please note our postage and handling charges reflect an estimate of Australia Post cost, which can vary by postcode of recipient for orders over 500g (3 cups or more). You will only be charged the amount quoted above, even if final postage costs exceed this.

Total:

Your contact details will never be shared with a third party. Payment via credit card will be processed via our secure online facility. No payment details will be viewed or stored by FOP Australia.

Join the 2018 Coffee Club online today!

**UPDATE 31/12/18: The 2018 Coffee Club has now closed. But you can still sign up for 2019 using the form below. Thank you for your support of people with Fibrodysplasia Ossificans Progressiva**

 

This year we are launching a new initiative where you can help the fight to beat FOP for the price of a takeaway coffee each week.

The FOP Australia Coffee Club is a planned giving program where you commit to give just $5 for each week of the year towards research and support activities to improve the lives of people living with Fibrodysplasia Ossificans Progressiva. In just a few clicks you can sign up online here for your donations to be deducted automatically each month in 2018. Donations are tax deductible and receipts will be issued automatically each time.

As a thank you for your generosity, after you sign up you will receive one of our popular reusable FOP Australia Eco-Cups! You will also receive thank you notes throughout the year with updates to show what your donations help achieve.

Please note:
– Secure online payment facility is provided by Stripe. Payment details are secure and are not viewed or stored by FOP Australia.
– Recurring donations of any amount can also be set up any time through our GiveNow facility
Manual  Coffee Club forms are also available upon request through info@fopaustralia.org if preferred.

– FOP Australia Eco-Cups are also available for individual sale online here

Join here now and make a difference in 2018, in less time than it takes to make a cuppa!

Once you enter your payment details at our secure online payment facility, $20 per calendar month will be automatically transferred for each remaining calendar month of this year. Maximum total cost $240. Your payment details will not be viewed or stored by FOP Australia. Your contact details will not be released to any third party.

 


Happy New Year 2018!

Thank you for all your support during 2017 – you helped FOP Australia smash fundraising goals, build support networks in our community, and help groundbreaking research! 2018 will be an exciting and critical year in the effort to find a cure for FOP, with three clinical trials underway globally, including the phase III palovarotene trial planned to open in Australia!

Sadly though, the new year also brings a reminder that every single year people with Fibrodysplasia Ossificans Progressiva can lose mobility, independence, and even their lives. Every year without a treatment means progression of this devastating disease, and is a reminder that we are racing the clock to find a cure.

FOP Australia need your support today. There will be a range of fundraisers throughout the year (including a brand new initiative launching this week!), and we would love to add your fundraising ideas too! If you can donate, any amount is welcome and greatly appreciated. If you are not able to donate, share/like/tweet our news and invite your friends to our fundraisers, website or Facebook page. Or contact us and we will help you find a way your skills and time can help in the fight to #cureFOP.


Member Newsletter Issue 4 out now!

Our last newsletter of 2017 is now available here, and will be emailed to all members today.

In this issue…

  • FOP Australia Coffee Club: Help #cure FOP for the cost of a coffee a week!
  • Building our capacity for advocacy: Finding our voice with Rare Voices Australia
  • Research news: Your supports funds research into new FOP therapies!
  • Introducing the board: Meet the team for 2017/18

FOP Australia publishes quarterly newsletters, and welcomes contributions from members, supporters, clinicians and sponsors at info@fopaustralia.org.


Annual Report 2016/17

FOP Australia are proud to release the  Annual Report for financial year 2016/17.

During the 2016/17 year:

Read more in the report, which includes our financial statements and independent auditor’s report, and ideas for how you can help.

As part of our ongoing strategic planning and commitment  to accountability, the key performance indicators we have set for the 2017/18 year are also available online here.

Thank you again for your support in 2016/17, and for continuing to support us in 2017/18!


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 CharityBuy.com.au 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!

http://www.charitybuy.com.au/fop-australia