Invitation to join the 2023 Coffee Club: Support people with FOP for the cost of a coffee per week

Published: January 1, 2023  ~   0

Happy new year! In 2023, we  need your help more than ever to support people with Fibrodysplasia Ossificans Progressiva and their search for a cure.

The FOP Australia Coffee Club is a planned giving program where you commit to give the price of a takeaway coffee ($5)  each week of the year towards research and support activities to improve the lives of people living with Fibrodysplasia Ossificans Progressiva. In just a few clicks you can sign up online here for your donations to be deducted automatically each month in 2023. Receipts will be issued automatically by email after each monthly transactions.

As a thank you for your generosity, after you sign up you will be posted  one of our popular reusable FOP Australia Eco-Cups.

Especially at this difficult time for all charities, this planned giving program plays an important role in helping FOP Australia be sure that we can keep our small charity going. So thank you for considering signing up to the 2023 Coffee Club and sharing this invitation with others.

Please note:
– Secure online payment facility is provided by Stripe. Payment details are secure and are not viewed or stored by FOP Australia.
– Recurring donations of any amount can also be set up any time through our GiveNow facility
Manual  Coffee Club forms are also available upon request through info@fopaustralia.org if preferred.
– FOP Australia Eco-Cups are also available for individual sale online here

Once you enter your payment details at our secure online payment facility, $20 per calendar month will be automatically transferred for each remaining calendar month of this year. Maximum total cost $240. Your payment details will not be viewed or stored by FOP Australia. Your contact details will not be released to any third party.

THANK YOU for your support for the 2020/21 financial year: Fundraising announcement

Published: August 25, 2021  ~   0

FOP Australia are very proud to share that during the 2020/21 financial year the FOP community in Australia and New Zealand gave $68,762 to support the global effort to support people with Fibrodysplasia Ossificans Progressiva and their fight for a cure.

Despite the challenges of fundraising during a global pandemic, requiring many planned events to be cancelled or changed, this is an increase over $18,000 more than the previous financial year. This is a great credit to the passion and commitment of our community, who found an amazing variety of ways to show their support.

  • Fundraising activities ranged from selling books, running a half-marathon (solo!), collecting old car batteries for scrap metal, and hosting a footy tipping competition. It was amazing to see many events organised by people who have not held fundraisers before, including new community members.
  • It is also very moving to see a large number of individual direct donations this year. At a time when many people are struggling, this show of support means more than ever.
  • The wide range of non-financial contributions made by volunteers to facilitate activities and keep our small charity running are also vital and sincerely appreciated.

The FOP Australia board is comprised of volunteers who are deeply committed to our shared goals, and to maximising the benefit of all your generous donations and hard fundraising work. In keeping with our prospectively announced KPIs for the 2020/21 year:

  • 50% of funds, totalling $34,381, raised will go to the global research effort. This will be used to invest in a range of research initiatives in order to maximise our impact on progress towards a cure.
    • As part of the contributions to research, $5000 will be given to the Shore Lab at the University of Pennsylvania, to support their ongoing efforts in to understanding this disease. This work on the foundational science of FOP forms the basis for many potential future therapeutic options.
    • Half of the remaining sum, totalling $14,690.50 will go towards the gene therapy campaign. This will be contributed via the IFOPA “In Pursuit of a Cure” program.
    • The remaining sum $14,690.50 will be invested in other drug development initiatives co-ordinated by IFOPA, and the board will work with IFOPA staff to determine where this can have maximal impact. In previous years, this has included support for the ACT for FOP grants which have identified and investigated multiple potential approaches towards effective treatment. This is also contributed via the “In Pursuit of a Cure” campaign, bringing our total campaign contribution to $29,381.
  • Aligning with feedback from our 2019 community survey we continue to build capacity to plan another in-person patient gathering, and as such 25% of funds raised ($17,190) have been put aside for this purpose. Although this may not be able to be facilitated for some time, recognising that this a high priority for the community, and will be one of our largest upcoming investments, we continue to work towards this.
  • The remaining 25% ($17,190) has been allocated to enable support activities. This will continue to include our Support Grant Program and will allow opportunities to explore more ways that we can support and advocate for people with FOP and their families.
  • Because of the generosity and ongoing work by volunteers and supporters, it has not been required to allocate donated funds from this financial year towards administration of the charity. Planning in previous years has enabled sufficient financial reserve to cover our ongoing operational costs, which we continue to minimise as much as possible in order to be sure that every contribution goes to support people with FOP and their fight for a cure.

Thank you for your support during the 2020/2021 financial year. Every contribution to FOP Australia – small and large, financial and non-financial – is very, very appreciated.

Dean Jamieson – They Called Me Lightning – Book Fundraiser

Published: February 17, 2021  ~   0

 

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

Published: March 22, 2020  ~   0

#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.

Support people with FOP for the cost of a coffee per week!

Published: January 4, 2020  ~   0

Happy new year! Make 2020 a year that you make a difference to the future of people living with FOP by joining the FOP Australia Coffee Club.

The FOP Australia Coffee Club is a planned giving program where you commit to give just $5 for each week of the year towards research and support activities to improve the lives of people living with Fibrodysplasia Ossificans Progressiva. In just a few clicks you can sign up online here for your donations to be deducted automatically each month in 2020. Donations are tax deductible and receipts will be issued automatically each time.

As a thank you for your generosity, after you sign up you will receive one of our popular reusable FOP Australia Eco-Cups! You will also receive thank you notes throughout the year with updates to show what your donations help achieve.

Please note:
– Secure online payment facility is provided by Stripe. Payment details are secure and are not viewed or stored by FOP Australia.
– Recurring donations of any amount can also be set up any time through our GiveNow facility
Manual  Coffee Club forms are also available upon request through info@fopaustralia.org if preferred.
– FOP Australia Eco-Cups are also available for individual sale online here

Join here now and make a difference in 2020, in less time than it takes to make a cuppa!

Once you enter your payment details at our secure online payment facility, $20 per calendar month will be automatically transferred for each remaining calendar month of this year. Maximum total cost $240. Your payment details will not be viewed or stored by FOP Australia. Your contact details will not be released to any third party.

FOP Australia 2019 Christmas Appeal

Published: December 6, 2019  ~   0

Help support people with FOP in Australia and New Zealand and their fight for a cure  by donating to our Christmas Appeal.

Donations of all sizes are warmly appreciated. All donations over $2 are tax deductible with receipts issued automatically.

https://www.givenow.com.au/fopaustraliaxmas2019

Order your 2019/2020 Entertainment Books online now!

Published: March 6, 2019  ~   0

Order your 2019/2020 Entertainment Books through FOP Australia now to save on travel, accomodation, meals and shopping!

Available in digital and hard copy formats, the Entertainment Books are available for regions around Australia and New Zealand. And there’s even a bargain $40 Bali edition this year which will save hundreds on your holiday!

Share this link with family and friends to help us raise money to support people with FOP: http://www.entbook.com.au/91408j5

Find an Entertainment Book for your area:

New Zealand
  • Auckland
  • Christchurch, Canterbury and Nelson
  • Dunedin, Invercargill and Queenstown
  • Waikato and Bay of Plenty
  • Wellington and Manawatu
Australia
  • Adelaide
  • Brisbane, Sunshine Coast and Surrounds
  • Carins, 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
  • Newcastle, Central Coast and Hunter
  • Perth
  • Sydney
  • Townsville
  • Woollongong, The South Coast and Southern Highlands
And don’t forget the $40 bargain Bali edition!

NEW merchandise available online!

Published: February 23, 2019  ~   0

Choose from a wide selection of items including polo shirts, caps, bags and hoodies to show your support and help raise awareness about Fibrodysplasia Ossificans Progressiva in our  brand new online store! 

When you wear one of these FOP Australia’s print-to-order designs you help raise awareness about Fibrodysplasia Ossificans Progressiva, and 10% from every sale comes straight to FOP Australia. New designs can be created for you, and tailored for upcoming fundraising events, or just to suit your style! We would love to hear your ideas at info@fopaustralia.org. We would also love to work with you to plan ideas for bulk orders of merchandise items to help spread the word further.

Recognising that many people with FOP have difficulty wearing many clothing items because of the disease, one of our wonderful supporters is an experienced seamstress who is willing to donate her time and materials to modify any of these items for people with FOP after purchase. (Specific individualised instructions will be required, and best to get in touch and discuss before ordering.) 

Our very popular Eco-cups are also still available for purchase for $15 here, with 100% of the purchase price going to FOP Australia.

Order your merchandise now so that you have it ready for FOP Awareness Day on 23rd April!

2019 Coffee Club: Support people with FOP for the price of a weekly coffee!

Published: January 1, 2019  ~   0

The FOP Australia Coffee Club is a planned giving program where you commit to give just $5 for each week of the year towards research and support activities to improve the lives of people living with Fibrodysplasia Ossificans Progressiva. In just a few clicks you can sign up online here for your donations to be deducted automatically each month in 2019. Donations are tax deductible and receipts will be issued automatically each time.

As a thank you for your generosity, after you sign up you will receive one of our popular reusable FOP Australia Eco-Cups! You will also receive thank you notes throughout the year with updates to show what your donations help achieve.

Please note:
– Secure online payment facility is provided by Stripe. Payment details are secure and are not viewed or stored by FOP Australia.
– Recurring donations of any amount can also be set up any time through our GiveNow facility
Manual  Coffee Club forms are also available upon request through info@fopaustralia.org if preferred.
– FOP Australia Eco-Cups are also available for individual sale online here

Join here now and make a difference in 2019, in less time than it takes to make a cuppa!

Once you enter your payment details at our secure online payment facility, $20 per calendar month will be automatically transferred for each remaining calendar month of this year. Maximum total cost $240. Your payment details will not be viewed or stored by FOP Australia. Your contact details will not be released to any third party.

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

Published: September 2, 2018  ~   0

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