NEW merchandise available online!

Published: February 23, 2019  ~   0

Choose from a wide selection of items including polo shirts, caps, bags and hoodies to show your support and help raise awareness about Fibrodysplasia Ossificans Progressiva in our  brand new online store! 

When you wear one of these FOP Australia’s print-to-order designs you help raise awareness about Fibrodysplasia Ossificans Progressiva, and 10% from every sale comes straight to FOP Australia. New designs can be created for you, and tailored for upcoming fundraising events, or just to suit your style! We would love to hear your ideas at info@fopaustralia.org. We would also love to work with you to plan ideas for bulk orders of merchandise items to help spread the word further.

Recognising that many people with FOP have difficulty wearing many clothing items because of the disease, one of our wonderful supporters is an experienced seamstress who is willing to donate her time and materials to modify any of these items for people with FOP after purchase. (Specific individualised instructions will be required, and best to get in touch and discuss before ordering.) 

Our very popular Eco-cups are also still available for purchase for $15 here, with 100% of the purchase price going to FOP Australia.

Order your merchandise now so that you have it ready for FOP Awareness Day on 23rd April!

2019 Coffee Club: Support people with FOP for the price of a weekly coffee!

Published: January 1, 2019  ~   0

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 2019. 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 2019, 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.

December 2018 newsletter: RVA summit, new fundraisers and more!

Published: December 31, 2018  ~   0

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:

  • Rare Voices Australia: FOP voices at the national 2018 summit
  • Advocacy strategy: Looking ahead towards getting access to a cure
  • Share your NDIS experiences: Do you have advice for navigating the system?
  • Fundraising fun: Thanks for a great start to the 2018/19 FY!

First notice of AGM and call for director nominations – 2018

Published: October 12, 2018  ~   0
FOP Australia is pleased to announce the tentative date and location of our Annual General Meeting along with Board Director Nominations.
Date: Tuesday 13th of November 2018

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

In person (Adelaide)

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 or computer or in person

http://tix.yt/fopausagm2018

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.

Proxy forms, AGM agenda, and director nomination information will be circulated no later than 21 days prior to the proposed  board meeting date
Any questions regarding the AGM and nominations are to be directed to the secretary Brooke Scott at info@fopaustralia.org or on 0422 511 797

Member Newsletter Issue 7: September 2018

Published: September 6, 2018  ~   0

In this edition  of our quarterly member newsletter:

  • $45,000 to life-changing research: How your donations will help the research effort
  • Mylan employees launch payroll giving program for FOP Australia: A new initiative launched by a generous new supporter
  • Research news: An update from A/Prof Ed Hsiao about a FOP Australia sponsored project at UCSF
  • Fundraising fun across the country: Thank you to all the amazing supporters who have got behind over a dozen fundraising events so far in 2018 in communities around the country
  • Advocating for FOP awareness: Ollie, Tyson and Jarvis share their stories
  • Lyn’s big (P!NK) night out!: We say hi to FOP champion Lyn Smith
  • Operation:  Send Tyson to Comic-Con: A superhero effort gives Tyson Stanley the trip of a lifetime
  • Renew your membership for 2018/19: Sign up online in just a few clicks (right here!)

 

Read previous newsletters here, and learn more about our 2018/19 goals on our Aims page.

$45,000 donated to FOP research from 2017/18 fundraisers!

Published: September 2, 2018  ~   0

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

Membership renewals due for the 2018/19 financial year

Published: July 1, 2018  ~   0

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:

  • Stay up to date with the latest news in FOP research
  • Hear about the latest fundraising activities
  • Receive quarterly newsletters with all the latest news from FOP Australia
  • Vote at the Annual General Meeting
  • Be eligible to nominate as a director of the board

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.

 

Australian phase III palovarotene trial site opens!

Published: June 1, 2018  ~   0

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.

FOP Awareness Day: New resources to raise awareness of FOP

Published: April 23, 2018  ~   0

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:

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.

 

 

Newsletter Issue 6: FOP Awareness Day and more!

Published: April 21, 2018  ~   0

Our latest quarterly newsletter is being released today to mark April 23rd, FOP Awareness Day. In this issue:

  • FOP Awareness Day: The international community unite to raise awareness
  • New resources: Educational flyers to share our key messages
  • Research news: IFOPA Webinars on key community issues
  • Online fundraisers: Do you have your 2017/18 Entertainment Book yet?

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).