In Pursuit of a Cure: FOP Gene therapy research program launches with support from the Australian and New Zealand FOP community

Published: September 3, 2020  ~   0

FOP Australia are excited to support the launch of an exciting new research program in to potential treatments for Fibrodysplasia Ossificans Progressiva.

Because FOP is caused by a single gene mutation, therapies that can act at the genetic level to edit, silence or “turn off” the affected gene hold a lot of potential promise. But research into these therapies is in very early stages, and a lot of work is still needed.

The International FOP Association have announced that the  first research grant for gene therapy will go to the University of Massachusetts, and because of the generous donations of people in Australia and New Zealand, we are proud to pass on $12,500AUD raised during the 2019/20 financial year to help get this exciting and important program off the ground.

On August 27th 2020, IFOPA hosted an online presentation explaining the potential for this research program, shared below:

Another $12,500AUD from the 2019/20 financial year will also go to the IFOPA ‘ACT (Accelerate Cures and Treatments) for FOP Grant Program’, a competitive research grant program facilitated by IFOPA to identify and support projects from all around the globe that can help develop potential therapies for this disease. Thank you to everyone who has continued to support FOP Australia and people living with FOP in Australia and New Zealand during this challenging  year – your ongoing generosity is amazing, humbling, and deeply appreciated.

Learn about other key milestones in the global research effort on our updated  Research page.

Support Grant Program: Round 3 opening 1st September

Published: August 25, 2020  ~   0

As part of our goal to support people living with Fibrodysplasia Ossificans Progressiva, FOP Australia is proud to launch the second round of our Support Grant Program to enable people with FOP (or their direct caregivers) to apply for direct financial support for items or activities that help them live with FOP.

The third  round of grants will open on the 1st September will close on the 30th of September 2020.

Details of how to apply will be sent to people with FOP and their caregivers that are registered with FOP Australia (so check at info@fopaustralia.org to make sure we have correct contact details!).

Please read the full Terms Of Reference before applying.

We are grateful to our independent panel of experts who will assess and rank the applications:

  • Dr Felicity Collins, Geneticist, Sydney Children’ Health Network
  • Mrs Georgie Hyder, Occupational Therapist, Central and Northern Adelaide Health Service
  • Ms Michelle Davis, Executive Director, International FOP Association

The returning officer for this round of grants will be Jada Carr. We are very grateful to Jada Carr, who  has volunteered her time to assist in this process which will remove the issue of the returning officer and their immediate family being unable to apply for a grant. All applications will be confidential and only accessed by Jada.

If you have any questions about the program please do not hesitate to email us at info@fopaustralia.org

Picture: Cody Wilson kindly agreed to share this photo of the ramp that was built using funds from the first round of support grants. 

August Newsletter: Gene Therapy, IFOPA Virtual Family Gathering and more!

Published: August 9, 2020  ~   0

Read all the news from the FOP community of Australia and New Zealand here.

Newsletters are sent to members and supporters four times each year – send us an email to subscribe to receive the next edition.

COVID-19 information for people with FOP

Published: July 28, 2020  ~   0

The International Clinical Council on FOP recently released an update to their Coronavirus (COVID-19) Precautions for FOP Families.

The major updates include: testing for COVID, return to work/school and utility of masks.

Read the precautions at https://www.ifopa.org/coronavirus_update_7_17.

 

Support Grant Program – Round 2 Open for applications

Published: May 1, 2020  ~   0

As part of our goal to support people living with Fibrodysplasia Ossificans Progressiva, FOP Australia is proud to launch the second round of our Support Grant Program to enable people with FOP (or their direct caregivers) to apply for direct financial support for items or activities that help them live with FOP.

This round of grants is now open and will close on the 31st of May 2020.

Printable copies of the application form are attached here, and can be sent back to info@fopaustralia.org marked CONFIDENTIAL in the subject heading. As we understand some people may have limited access to printing and scanning facilities we are also trialing an online application form, which is accessible here using the password Grant1.

Please read the full Terms Of Reference before applying.

We are grateful to our independent panel of experts who will assess and rank the applications:

  • Dr Felicity Collins, Geneticist, Sydney Children’ Health Network
  • Mrs Georgie Hyder, Occupational Therapist, Central and Northern Adelaide Health Service
  • Ms Michelle Davis, Executive Director, International FOP Association

The returning officer for this round of grants will be Jada Carr assisted by Lydia Scott.

Jada Carr has volunteered her time to assist in this process which will remove the issue of the returning officer and their immediate family being unable to apply for a grant. For this round of grants Jada will be assisted by Lydia Scott. All applications will be confidential and only accessed by Jada and Lydia.

If you have any questions about the program please do not hesitate to email us at info@fopaustralia.org

FOP Australia Newsletter – March 2020

Published: March 24, 2020  ~   0

We are pleased to present our first newsletter for 2020, read it here !!

Find out about:

#Sockfie4FOP #FunFeet4FOP and our campaign for FOP Awareness Day on April 23

How to roll overseas with a wheelchair by Ollie Collins

Support Grant Program

and more!!

 

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 this year 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 this year, 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.

December Newsletter – Tyson’s Disco, AGM Update, Christmas Appeal and More

Published: December 20, 2019  ~   0

We are pleased to present our final newsletter for 2019 in our December newsletter

Find out about:

Tyson’s Disco

FY 18/19 AGM Update

Support Grant Program

and more!!

Thank you for your continued support in 2019.

 

 

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