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.

Check out our latest quarterly online newsletter for news about:

• International FOP Awareness Day- April 23rd
• The #FunFeet4FOP campaign
• Introduce a politician to FOP
• Clinician education sessions
• Online merchandise

…. and more! Please contact us if you have a contribution for a future edition.

In preparation for this year’s FOP Awareness Day on April 23rd we are proud to release our new flyers to raise awareness of Fibrodysplasia Ossificans Progressiva, and help spread some of our key messages.

Because of the generous support of local businesses, the new FOP Australia banner and flyers were ready for the 2018 Somerville Family Day, where Talia Wilson, Liv Sedgwick, Tyson Stanley and Daniel Petrovic proudly displayed them alongside the FOP Australia Eco-cups for sale. The new resources and the day were a big success, with cup sales, new memberships and over $200 cash donated towards FOP research! Well done team!

Do you have an upcoming event where you could do a similar stall to raise FOP awareness? We can help provide resources and ideas, and assist in making sure appropriate permits are in place for your state. Or, if you would like to raise awarenesss by sharing copies of the FOP Australia flyer via your business, friends or family, please contact us and we will happily share hard copy or PDF versions.

Thank you to our generous supporters:

A huge thank you to graphic designer Jarryd Bravo who donated his services free of charge, and got our banner and flyer design ready to go in no time! We recommend contacting Jarryd for your illustration, photography or graphic design needs:

• • Website: http://www.jarrydbravo.com
  • Facebook: https://www.facebook.com/jbthecreativeone
  • Instagram: https://www.instagram.com/jarrydbravo.com

Michelle Crouch from Peak Digital kindly donated printing services for 1000 high quality A5 flyers. We recommend www.peakdigital.com.au for printing in Melbourne.

Glenn May at Signforce PL provided our banner and we are thrilled with the result! For signage in Melbourne, go to www.signforcepl.com.au or their Facebook page.

Thank you also to volunteer Leonie Starnawski for assistance editing content for these resources.

We are extremely grateful to these businesses for their high quality work and efforts to help us raise awareness. But who also – by donating their time and services – have helped make sure that funds donated to FOP Australia can be used to support the global research effort and support people. We welcome any other businesses who may be interested in donating services to contact us. 

A special thank you to the FOP families who kindly allowed us to use their photos. Sharing your pictures and stories is invaluable in helping others understand why we need to beat FOP.

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

During the 2016/17 year:

• Significant milestones were reached in the global research effort, including  planning for the first phase III clinical trial of palovarotene
• Supporters of FOP Australia greatly exceeded our fundraising goal, with over $37,000 donated
• Electronic platforms set up to help with fundraising activities, direct donation and electronic membership renewal
• FOP Australia expanded member communications with commencement of regular newsletters and clinician updates

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!

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

Time:

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

http://tix.yt/fopausagm2017

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 info@fopaustralia.org or on 0422 511 797

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

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 !

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

One of the objectives of FOP Australia is to educate the community about FOP.

Rare Disease Day was held on February 29th, on this day Lara and her son Jarvis who has FOP visited Junction Park State School in Queensland wearing yellow to support the day.

Lara gave a talk about FOP and helped the school to learn about the most common clue to FOP which is malformed big toes.

Thank you to Junction Park State School for your support, we raised $443 on this day which will help us with our patient event in June.