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.


FOP Awareness Day – April 23rd

Fibrodysplasia Ossificans Progressiva is one of the most rare and disabling conditions known to medicine, causing muscle/soft tissue to be replaced by bone, leading to progressive and permanent loss of mobility. There is a global research effort looking for a cure, and April 23rd marks the anniversary of the discovery of the FOP gene, a major milestone in this battle. Therefore April 23rd is International FOP Awareness Day.

Although donations are crucial for research to continue,  simply showing support is also important because having a rare disease like FOP can be very isolating. Raising awareness of rare diseases is important so that the community (and our political representatives) know the importance of providing resources for people with rare disease. Increasing awareness of FOP is particularly important to help increase recognition and prompt diagnosis, avoiding harm from unnecessary investigations. So this month we are asking you to show people with FOP that you care and support the effort to #cureFOP by helping us spread the word on April 23rd!

How to help in 1 second:

From now until FOP Awareness Day on 23rd April we will be sharing 16 facts about FOP on our Facebook and Twitter pages – one for every person living with FOP in Australia and New Zealand. We would love you to like/share/retweet our messages.

This month we also want to spread the word further by increasing our Facebook followers… We having over 500 followers now, can you help us reach 1000?If everyone invites at least one friend to follow us, we can do it! Please invite your ‘plus 1’ to our Facebook page today!

How to help in 1 minute:

Other ways to help include using the FOP Awareness Day profile picture and use the hashtag #cureFOP on social media. Use this banner as an email signature or social media cover picture during April to help get the message out to your contacts.

How to help in 10 minutes:

Please take some time to read and share our new profiles at ‘My Life with FOP’ to help others understand how FOP affects peoples’ lives. This website includes many other resources to share including FOP FAQs, treatment guidelines, informative videos, upcoming events, newsletters, how to help fundraise, and links to donate or become a member.

For more:

Read more about FOP Awareness Day activities worldwide from the International FOP Association here. If you have ideas on how you can help FOP Australia increase awareness in your community, we would love to hear from you at info@fopaustralia.org. Thank you for helping us with our 2017 FOP Awareness Day campaign and to #cureFOP !

 


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.