Dean Jamieson – They Called Me Lightning – Book Fundraiser

 

Dean Jamieson (Father of FOP Australia Chair Brooke Scott) has published his first book “They Called Me Lightning”.

The book is his story starting at the age of sixteen where he left school to chase his dream to be a real-life cowboy. The book describes tales of fear, adventure, survival and growing up whilst working on outback stations in SA and NT in the late 1950’s and early 1960’s.

Part proceeds of the sale of any books will support FOP Australia.

Thank you to Dean for supporting us!!

You can contact Dean and purchase a book at this link or via email to deanwjamieson@yahoo.com


FOP Awareness Day April 23 2020

#FunFeet4FOP #Sockfie4FOP

Join us on FOP Awareness Day on April 23 by showing us your #FunFeet4FOP.

This year we are selling #Sockfie4FOP for $10 + postage. Socks are one size fits all (even for your furry friends)

Purchase your socks and upload your picture to social media using #FunFeet4FOP and #Sockfie4FOP and help us to raise awareness of Fibrodysplasia Ossificans Progressiva.

Don’t have a pair of FOP socks, get involved by wearing your craziest socks!

 

 

 

At this stage we can only sell socks within Australia and New Zealand

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.

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

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


Palovarotene – Phase 3 Australian Trial Site

As many of you will know, Professor Matt Brown’s group from Queensland University of Technology and Princess Alexandra Hospital (PAH) and Dr Ben Whitehead from Brisbane’s Lady Cilento Children’s Hospital in Brisbane have been acting as the Australian/New Zealand centre for FOP clinical trials, currently with studies of Palovarotene sponsored by Clementia.  Coordinated by Linda Bradbury (nurse practitioner, PAH) this has meant Australian/New Zealand patients have been able to participate in the studies without having to fly to the US, something that previously prevented many of us participating.

Clementia have recently announced that in an interim analysis of what is called a ‘phase 2’ study of Palovarotene that the medication looks to be effective at significantly reducing the amount of new bone that develops during FOP flares.  Importantly the medication also appears pretty safe.   This is extremely exciting and so Clementia have decided to proceed with the definitive ‘phase 3’ study of the medication.  Professor Brown’s group will again be the Australian/New Zealand centre for that study, which will be open to FOP patients age 4 or more years.

The study won’t begin enrolling until towards the end of this year but clearly this is a great opportunity for FOP patients to get access to what at this point looks like it may be the first really effective medication to slow the progression of FOP.

If you have any queries about this, please send them by email to Linda at linda.bradbury@qut.edu.au

Brooke Scott

IPC Representative IFOPA

Secretary FOP Australia


Member Newsletter Issue 2

The second edition of our quarterly newsletter is out now, just in time for FOP Awareness Day on April 23rd!

In this issue…
– FOP Clinical Trial Centre: Prof Matt Brown talks FOP research in Australia
– Fundraising frenzy: Aussies run, dance and decorate nails to #cureFOP
– IFOPA Quality of LIFE Awards: Practical support from our global community
– Your story is a gift to FOP research: The FOP Connection Registry
… 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 by emailing us with your updated contact details at info@fopaustralia.org.


Fundraising Frenzy!

Australia dances, runs and decorates nails to #cureFOP

Because of your support, FOP Australia raised over $5000 for FOP research during February and March. This was the result of a diverse range of activities all over the country, and contributions from hundreds of people. Every contribution, whatever size, is hugely appreciated as a sign of support for those with FOP.

  • Kicking off with the first fundraiser of 2017, Tyson Stanley and his mates organised a superhero themed disco in Somerville on February 11. ‘Tyso and Gypsy’s Marvel-ous Marvel vs DC disco’ raised $538. Thank you Tyson and team!
  • Shan Carty ran an online Jamberry fundraiser during February, including a Facebook party on Rare Disease Day to connect our supporters across the country. Thank you for helping Shan raise $941, meeting the aim of beating last year’s total of $902!
  • A fundraiser that everyone in Australia and NZ can get behind is 2017/18 Entertainment Books. Opening in March, by the end of the month this had already raised $114 online, with sales open for several months yet. Thank you Amy Ellingworth and Lara Boniface for their ongoing work on this fundraiser.
  • FOP Australia has also been very lucky to receive over $600 through direct donations using the ‘Donate Now’ buttons on our website and Facebook page. We were particularly excited to see our first regular monthly donation set up through this facility!
  • A lovely surprise was the $970 raised by the Peninsula City Church in Victoria at a quiz night on the 17th March. Our treasurer Talia Wilson attended on behalf of the FOP Australia board to thank everyone for their contributions.
  • The 12km Bay-City fun run was the first FOP Australia fundraiser in South Australia. $2010 was donated to our team of eight runners and walkers who completed the 12km course in t-shirts promoting our organisation. If there is a fun run near you that you would like to use as a way to support FOP Australia, we would love to help you!

The Bay-City fun run was also the first time we have used our new ‘mycause’ platform. The mycause platform makes it easy for our supporters to fundraise using events or ideas of any size, whether it raises $20 or $20,000! As well as making it easier to manage funds for large events, it can also help people create gift cards, accept donations for FOP in lieu of birthday/anniversary gifts, or support individual pledges. This is an exciting new development for FOP Australia to help us expand our range and type of fundraising activities. If you have ideas or questions about mycause, please get in touch at info@fopaustralia.org.

Remember, all donations over $2 are tax deductible, and our ‘Donate Now’ and mycause facilities automatically generate and email tax receipts directly.

As outlined in our 2016/17 strategic plan we aim to make a $10,000 contribution to the global FOP research effort at the end of this financial year through the International FOP Association. IFOPA ensure that our hard-earned and highly valued donations are directed to support high-quality research necessary to further the fight to cure FOP. So far we are on track to meet this goal, THANK YOU!

Photos clockwise from top of map: Jamberry fundraiser afternoon tea in Broome WA, Entertainment Book image, Tyson Stanley with family and friends at his disco in Somerville Victoria, the Bay-City team prepare in Adelaide, SA.


Bay-City Fun Run 19th March (Adelaide)

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!

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?

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

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.