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.

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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.