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. 

FOP Australia delivers $34K for research

Published: September 8, 2016  ~   0

FOP Australia delivers $34K for research

FOP Australia is making a donation of $34,000 to medical research related to a cure for Fibrodysplasia Ossificans Progressiva (FOP) after a year of successful fundraising which included a launch event in June 2016.

“We want to thank every single person who has helped us raise this amount of money.  All those who generously made a donation, held a fundraiser on our behalf and supported our launch event in any way” said Lara Boniface, Chairperson of FOP Australia’s Board.

Australian and New Zealand based patients and their families and supporters gathered at Rydges Hotel in Brisbane on 4 June to officially launch the patient not-for-profit organisation that was formed mid-2015.

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“It was an amazing night with such a great atmosphere.  Having so many people supporting us and speaking positively about the potential of research towards a cure in the future was very special” said Brooke Scott, an Australian patient.

Oliver Collins and his family have been an integral part of the international FOP community for the past 20 plus years. Oliver spoke at the launch, leaving the audience with a deeper understanding of living with FOP.  He spoke of those practicalities and challenges as a young adult studying at university with a full life ahead of him.  He reminded the audience of the daily support required and the incredible difference a positive attitude makes.

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Thanks to the generosity of more than 200 guests,FOP Australia members, patients, their families and friends, the final donations tallied close to $20,000.

“We are proud to donate all this and more to research because it is one of the reasons we established FOP Australia in the first place” said Lara.

“Our primary goals include contributing to research a cure for FOP, and by donating this money via The International FOP Association (IFOPA) – we can be certain it is used in the best possible ways” she added.

IFOPA is the leading international non-profit organisation supporting medical research, education and communication for those afflicted by the rare genetic condition that is FOP.

FOP Australia received overwhelmingly positive feedback on the launch event as well as a patient gathering that took place in Brisbane from June 2-5.  It was the first chance in recent years for patients and families of FOP in Australia and New Zealand to gather together and discuss recent medical progress, trial results and other related topics.

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“After we returned to Victoria after the event, Tyson was visibly brighter and more positive about life.  I think the chance to meet his ‘FOP family’, hear the support from the community and enjoy a fun party really had a positive effect on him” said Talia Wilson, whose 15 year old son Tyson has FOP.

Since its inception, FOP Australia has been the beneficiary of personal fundraising efforts and donations that have added an additional $14K to our total.  We would like to acknowledge the incredible support of just some of these special people and organisations.  Their efforts, both small and large, have gone a long way to raise awareness and understanding of FOP within Australia.

  • The Collins family for their significant donation
  • Shan Carty, Independent Jamberry Consultant who donated profits from an online Jamberry Nails sale
  • Imogen Taylor and the Sydney medicos who ran the City2Surf
  • Junction Park State School in Brisbane for hosting a gold coin donation ‘free dress day’

Our work does not stop here.  We are an organisation of volunteers who is always looking for ideas and help to achieve our ‘vision’.  You can continue to help us by making a donation at: FOP Australia Give Now page .

If you are not a member, join our organisation for the small fee of $10 annually.  Membership forms are available here.

Our vision and mission is to:

  1. help educate the community, in particular medical professionals, on the symptoms and medical management of FOP
  2. support all patients and families living with FOP in Australia and more widely in the Asia Pacific region
  3. raise funds for medical research both in Australia and overseas through established and world renowned FOP research centres
  4. advocate at community and government level to ensure any future approved treatments be made available to patients in Australia
  5. nurture a community of highly motivated and passionate individuals that will continue to expand our FOP networks around Australia

 

You can stay up to date on our progress and future fund raising plans via our website: FOPAustralia.org