Entertainment Books 2017/2018: Online fundraiser

Published: March 10, 2017  ~   0

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)

Published: March 3, 2017  ~   0

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.

Jamberry Online Fundraiser!

Published: February 3, 2017  ~   0

Shan Carty, Independent Consultant for Jamberry, is once again kindly donating her time and profits to us by organising an online fundraising event this month.

Jamberry sells high quality durable nail wraps and a variety of professional nail lacquers, gel enamels and nail care products.

Last year lots of FOP Australia members discovered the fun and easy to use products when Shan organised our first ever online fundraising event, raising $902.

Shan is hosting an online Facebook party for FOP Australia on February 28th to raise money for Rare Disease Day. Last year the online party was a huge success, lots of fun and super easy to join in, so we hope you can join us this year and help us beat last year’s total! Make sure you follow us on Facebook so you don’t miss the party!

But you don’t need to wait! From now until March 6th you can buy Jamberry products at shancarty.jamberry.com and by selecting the ‘FOP Australia Fundraiser Party’ at checkout all profits will go to FOP Australia!

What is Rare Disease Day?

Published: February 1, 2017  ~   0

International Rare Disease Day takes place on the last day of February each year to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. It is a public campaign and also seeks to raise awareness amongst policy makers, public authorities, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Rare Disease Day events are run by hundreds of patient organisations all over the world that work on a local and national level to raise awareness for the rare disease community in their countries. The campaign was launched by EURORDIS as a European event and has progressively become a world phenomenon, with participation in over 80 countries in 2016. On rarediseaseday.org you can find information about the thousands of events happening around the world.

FOP Australia would love you to join our online fundraising Jamberry party to mark the day. But we also encourage members to…

  • find an event nearby
  • hold their own local event to raise awareness and funds for rare disease research
  • share the logo
  • use the the logo, profile picture, or banner on your Facebook page on Rare Disease Day
  • use the email signature for all your emails during February
  • learn more at rarediseaseday.org
  • share this information on social media to help get give rare diseases a voice!

Information and logo by EURORDIS from rarediseaseday.org used here in keeping with their stated Conditions of Use. 

Member Newsletter 2017 Issue 1

Published: January 27, 2017  ~   0

Our very first quarterly FOP Australia Member Newsletter is now out!

In this issue…

  • Research Update from the 2016 IFOPA Drug Development Forum (including news of the first clinical trial to enrol in Australia!)
  • What is Rare Disease Day?
  • Jamberry Online Fundraiser begins 10th February
  • Every dog has their day: Tyson at the AFL Grand Final
  • Q+A with Prof Kaplan and Dr Pignolo: Transcript now online

… 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 with your contact details.

The first of our twice-yearly clinician updates has also been released. To make sure your health care team receive these updates and stay in touch with the latest developments in FOP treatment,  remind them that all clinicians get lifetime free membership to FOP Australia, just by emailing us at info@fopaustralia.org.

First FOP clinical trial in Australia now enrolling!

Published: January 26, 2017  ~   0

Clementia Pharmaceuticals are now enrolling participants in Australia for the second stage of their phase II trial of palovarotene!

An Open-Label Extension Study of Palovarotene to Treat Preosseous Flare-ups in FOP Subjects is currently open for enrolments at the Queensland University of Technology. This stage will follow the 40 participants from the first stage, and enrol 20 new participants internationally in this 24 month study.

Top line results from the first stage are detailed here.

This study is only for patients who have finished growing, so this excludes most children under 15. Full trial details including inclusion criteria are available on clinicaltrials.gov (study code NCT02279095).

If you have FOP, please discuss with your health care team regarding whether you may be eligible for this trial, and whether this trial is right for you.
This is the first time part of a clinical trial has been open in Australia and a major milestone for the Australian FOP community. Although many of our community, including children and those with variant forms of FOP, will not be eligible for this trial, it is a big step forward and a cause for hope.

We are extremely grateful to the team at Clementia Pharmaceuticals (pictured above), the team at QUT, and dedicated community members who have worked together to make this happen.

 

Somerville Fundraising Disco February 11th (Victoria)

Published: January 22, 2017  ~   0

FOP Australia member Tyson Stanley is working hard to get ready for  “Tyso and Gypsy’s Marvel-ous Marvel vs DC Disco” at the Somerville Scout Hall on February 11th.

16 year old Tyson has already organised several disco events, and we are very excited that this year he has chosen to donate proceeds from the event to FOP Australia.

Dress up as your favourite Marvel or DC character to join in the fun and maybe even win a prize! Food, drinks and glow products will be available for purchase. There will also be an appearance by FOX Racing team member Jayo Archer.

Entry is only $5 for 1 (or $15 for 4, $20 for 5, or $25 for 6). So if you are in Victoria, get along to the Somerville Scout Hall in Clarinda St from 6pm to show your support, have fun, and win some prizes!

Thank you Tyson for your hard work – we hope you have a great night!

Q+A with Prof Kaplan and Dr Pignolo: Transcript now available!

Published: January 19, 2017  ~   0

One of the most popular sessions of the 2016 Australasian FOP Patient Gathering in Brisbane was the discussion with international experts Professor Fred Kaplan and Dr Robert Pignolo.

They joined us live from the University of Pennsylvania to answer questions from the ten FOP families at the meeting.

A transcript from this session is available for download. This includes additional contact details for those seeking further information on the topics discussed.

We thank Prof Kaplan and Dr Pignolo for their dedication and ongoing support of the global FOP community, including FOP Australia.

FOP Australia Eco-Cups available online now!

Published: January 19, 2017  ~   0

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

    • Show your support for those living with FOP while you have your cuppa!
    • Help save the environment while you support FOP research by avoiding wasteful takeaway cups
    • Our website address is shown on the cup, so admirers of your stylish new cup can also find out about Fibrodysplasia Ossificans Progressiva
    • These reusable Eco-Cups have a heat resistant band, tight sealing lid, are microwave friendly and fit standard travel cupholders

FOP Australia’s new Eco-Cups are the easiest way yet to help FOP research, show your support, promote FOP information and help the environment! And all before you finish your morning coffee! 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 Fibrodysplasia Ossificans Progressiva. (*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 cups at your local cafe via info@fopaustralia.org. As this is our first piece of merchandise we have ordered conservatively, so buy now while stocks last! Or receive a complimentary FOP Australia Eco-Cup when you join our 2018 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.

FOP Australia FY 2015/2016 Annual Report

Published: December 3, 2016  ~   0

The FOP Australia Annual Report for FY 2015/2016 is now available.

The report shows our key activities for the past financial year, financial information, our structure and people, and most importantly acknowledges the people that have helped us to achieve the great results of the past year.

Thank you to everyone who has played a part in our success, we look forward to working with you to find a cure for FOP.

Read our Annual Report 2015/16 here.