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:
Please register for the AGM at the following link, tickets are available for video conference – ZOOM either via phone or computer or in person
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.
In this edition of our quarterly member newsletter:
Read previous newsletters here, and learn more about our 2018/19 goals on our Aims page.
Because of your generous support FOP Australia’s fundraising goal for 2017/18 was exceeded, enabling donations of $45,000 AUD to groundbreaking Fibrodysplasia Ossificans Progressiva research!
By working with IFOPA and engaging directly with researchers, FOP Australia make sure that your donations go towards the work that most effectively progresses the research effort towards a cure for FOP.
This is our largest annual contribution to research yet, and brings FOP Australia’s contributions to research to $109,000 AUD, following $34,000 from 2015/16 fundraisers, and $30,000 from 2016/17 events.
To learn more about FOP Australia’s 2017/18 activities, read the review of 2017/18 Key Performance Indicators. And see what goals FOP Australia are working towards in our 2018/19 KPIs..
This is only possible with your support, and every dollar makes a difference. So thank you for joining, donating, fundraising or contributing in any way you can.
Photo: Brooke Scott, FOP Australia Secretary
It’s that time of year again! End of financial year means time to renew your annual membership. You can join or renew your membership in a few clicks using our online form, including secure credit card payment facilities. However payment by direct transfer is also welcome, by emailing the PDF membership form which includes bank transfer details.
By joining as a member you can:
We welcome members from Australia and New Zealand. FOP Australia membership is $10 for the period of the financial year. People with FOP, and clinicians interested in FOP, are offered free membership – contact us to find out more.
FOP Australia is excited to announce the upcoming commencement of the phase 3 clinical trial of Palovarotene in Brisbane later this month.
This is a big achievement for the Fibrodysplasia Ossificans Progressiva community in Australia and we are thankful for everyone that has been involved to make this a reality.
Professor Matt Brown, Dr Ben Whitehead, and Ms Linda Bradbury are delighted to be working with FOP Australia in enabling Australia’s FOP community to get access to effective treatment for FOP through this clinical trial.
The above image was made for Rare Disease Day 28th February 2018 based on input from the Australian FOP community as words that give them hope.
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.
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:
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.
Our latest quarterly newsletter is being released today to mark April 23rd, FOP Awareness Day. In this issue:
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 who contact us at info@fopaustralia.org).
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!).
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?
To learn more about the goals and activities of FOP Australia, visit the ‘About Us’ section and check our our quarterly member newsletters.