Emmah Money's inspired journey toward a cure for cystic fibrosis

Sometimes you meet people in life and you just think wow, this person is going to have an impact on the world. Emmah Money is one such lady.


Emmah is 28 and living with Cystic Fibrosis (CF). When she was born she was not expected to live beyond her fifth birthday, doctors suggested the lung disease caused by CF would progress quickly and would soon take her life.


But Emmah has proven from an early age that she was going to be someone who would defy the odds against her - a valuable lesson she learnt from her adoptive parent’s right from the moment they brought Emmah home and into their family.


When Emmah was younger, during one of her many visits to the Women’s and Children’s Hospital, her mum Joy introduced her to Associate Professor David Parsons, who heads up the Adelaide research team that Cure4CF supports. Emmah distinctly remembers her mum telling her that he was going to be the man that would one day find a cure for cystic fibrosis, and she has held on to that hope, and memory ever since.


And so began Emmah's pursuit of actively raising awareness and funds for a cure for CF. 


Over the years Emmah has lost many of her close friends to the devastating effects of this disease, but this has not diminished her absolute resolve to be part of the cure that she hopes will one day improve and save her life, and the lives of so many others in the community.


And now, Emmah has an even greater reason to work toward that goal - her two beautiful children, three year old Ayvah, meaning breath of life, and little Logan who will turn one in July.


Emmah is very aware that the average life expectancy for someone living with cystic fibrosis is just 38 years, just ten years from her current age. But for someone who has proven they are anything but average, she is doing everything she can to beat these odds as well.


"Now that I am a mother I couldn’t imagine leaving this world and my babies behind...I am working so hard every day, behind the scenes to try and maintain my health” says Emmah.


But we do not think Emmah should have to fight for her life, and for a cure for cystic fibrosis alone. 


The research team in Adelaide, and other teams right across the globe are doing all that they can to find a cure, but it is a lack of funding that means its development is going to take time. And unfortunately it is time that Emmah, like so many people living with CF, does not have the luxury of counting on.


However this is where you and I can help.


By making a donation of $24 today, you can help take the research we support to cure cystic fibrosis airway disease closer to people like Emmah who are desperately waiting and fighting for a cure.


$24 may not mean a great deal to you, but to the research team we support, this provides for another 30 minutes of vital research time in the laboratory. 30 minutes closer to a potential cure for cystic fibrosis airway disease.


Your gift, of whatever you can afford, will and does make a real difference. Together we can make this possible and I hope you will join Emma and Cure4CF in this journey toward a cure.



To watch Emmah address the Health Plenary - One Young World Summit 2012 click here.

https://heroix.everydayhero.com.au/event/CureCF/donate

Emmah has her own blog and Facebook page where she shares her journey of living with cystic fibrosis - check it out here.

Fundraise For Cure4CF

Be Part Of The Cure4CF


You can play a very important role in the cure for cystic fibrosis by putting your passion and planning skills to good use by hosting an event to benefit Cure4CF Foundation.

Cure4CF has been supported by incredible people right across Australia who have done just that, from organising Gala Balls; Wine and cheese events; and a Girls night in, through to 65km walks and month long social media campaigns. Each activity has had a big impact and taken us one step closer to a cure for CF airway disease.

We think fundraising should be fun so why not let your imagination run wild, come up with an event you would like to hold and register with us today.

And of course we are here to help you so we have put together a few tools that might be of use to help get you started. Just click on the headings below and download the resources you need.

Register Your Event

Fundraising Event Starter Pack

Fundraising Sample Event Plan and Budget

Create Your Event on Everyday Hero

Research Update - October 2015 to March 2016


It is with great pleasure that we can provide you with an update from the Adelaide Cystic Fibrosis Airway Gene Therapy Research Group highlighting some of their key achievements during the past six months. CLICK HERE to read all about it.

April E-News welcome

Welcome to our April edition of the Cure4CF Foundation E-News. We hope you enjoy taking some time out of your busy day to learn about how together, we are making a significant contribution to the global efforts to cure cystic fibrosis.

This edition we have a lot of updates to share with you from the Adelaide research team we support, but before we get started, as always, we just want to say thank you to the Cure4CF community!

We have wonderful friends right across Australia who are jumping on board to join us in being part of the for cure cystic fibrosis, and we really could not be more grateful. You may have seen the Robins family in Queensland who ran a social media campaign 'Go Red For Feb', and posted a red themed photo to raise awareness and funds for research to cure cystic fibrosis each day during the month of February. Team Robins raised an incredible $2,500 to support Cure4CF.

Susan Gascoine, whose granddaughter is living with cystic fibrosis, has set herself an enormous challenge of walking from Renmark to Adelaide during April and May. Susan is aiming to raise $10,000 which she will share between Cure4CF and CFSA. We are in absolute awe of Susan and look forward to welcoming her at the finish line. If you would like to show your support please
click here.

Our wonderful friends at the Geelong CF Support Group are holding a Gala Ball on the 21st May to raise money for Cure4CF Foundation and are doing a tremendous job pulling the event together (they have even had to move the date to allow for more people to attend!). If you would like to find out more about their event 
click here.

On Saturday 28 May a formal charity event dinner, the 65 Roses Evening Event, will take place at the Marquee Ballroom, Sfera's Park Suite and Convention Centre. Part proceeds will support Cure4CF Foundation, so if you are looking for a fabulous evening out with friends of family we recommend you buy your tickets before they sell out.

And we had some lovely ladies lace up their runners and raise money for Cure4CF during the Bay-City Fun Run, held in Adelaide on Sunday 20 March. One of these heroes was Dimity Bullen-Nicholas who is living with cystic fibrosis, and had never dreamt of running a race like the Bay-City before. Dimity put in some hard yards to tackle the challenge and has inspired us all by not only completing the 12km, but with her friend Sam, has raised over $1,500 to support Cure4CF.

These are just some of the incredibly inspiring people who are helping Cure4CF Foundation fulfil our mission to be part of the cure for cystic fibrosis. If you have been thinking about getting involved we urge you to take action today, the cure for CF cannot wait. We would love to hear from you, visit our website
www.cure4cf.org, email us info@cure4cf.org or call on 1300 131 480 and we look forward to welcoming you on our journey to a cure.

From all of us at Cure4CF Foundation we thank you for your continued support.

Cure4CF welcomes new Board member Lachlan Monfries.


CURE4CF WELCOMES NEW BOARD MEMBER LACHLAN MONFRIES


Cure4CF Ambassador Angus Monfries, Board Member Lachlan Monfries
with Cure4CF Founder Mr Greg Oke and Mrs Susan Oke.
Cure4CF Foundation is delighted to announce the appointment of Lachlan Monfries as their newest Board member.

Lachlan brings to the Cure4CF Board a deep understanding of the impact of cystic fibrosis, and is passionate about finding a cure having a history of the disease in his family.

“As an adult with CF, I’m very proud to join the Board of Cure4CF Foundation. I hope my experience in business and living with the disease will allow me to make a contribution to the great work currently underway to find a cure for CF.” said Lachlan.

Lachlan is Centre Manager, Westfield Tea Tree Plaza where he is responsible for the operations and strategic direction of an asset with 10.5 million customers per year, and annual sales of just over $500 million. Lachlan holds a Bachelor of Commerce and a Master of Business Administration.

Cure4CF is very pleased to welcome Lachlan and all he will bring to the Board with his wealth of business and marketing knowledge, and his personal experience of CF.  Cure4CF looks forward to working with Lachlan and wish him all the best in his role as Cure4CF Board member.

Coopers Brewery Foundation backs SA cystic fibrosis research

The Coopers Brewery Foundation backs South Australian cystic fibrosis research.

Cure4CF Foundation was thrilled to be beneficiary of the generosity of the Coopers Brewery Foundation recently, with a donation of $31,900 towards research to cure cystic fibrosis airway disease. A donation which Cure4CF Foundation Chairman, David Coluccio says “Could not have arrived at a better time”.

Every four days a baby is born with cystic fibrosis (CF) in Australia and in most cases, to parents who were unaware they were carriers of the defective gene – since carriers can be unaffected.
Cystic fibrosis is the most common inherited disease causing premature death affecting the developed world. CF is both life impacting, being a multi-organ disease, affecting the lungs, gut, liver, pancreas and reproductive tissues - and life limiting, even with recent medical advances, at present about half of those with CF will die by their late 30s from lung disease.
There is currently no cure.
But thanks to incredibly generous partners in the community like the Coopers Brewery Foundation, the Cure4CF Foundation aims to change that.
Established in 2009, the Cure4CF vision is to find a cure for cystic fibrosis by raising and directing funds to promising avenues of research. To date, this has seen the Foundation support the work of the Adelaide CF Airway Gene Therapy Research Group.
Over the past 15 years the research group has been working on their unique lentiviral gene vector with the aim of curing the airway disease caused by cystic fibrosis, which is by far the most common cause for early death.
The research group employs a world-leading gene transfer approach. They use an especially modified virus to take a correcting gene into the airway, supplementing the missing activity of the defective gene that causes CF airway disease. The cell can then take over the job of producing the normal airway physiology.
The most exciting aspect of the work is that although this approach should produce long-term gene therapy treatments, it is also a potential cure for the airway disease in CF. It is designed to include correction of airway stem cells. This means that as new airway cells are produced by the body they will have the corrected gene already operating within them. Success in this research area means that people living with CF airway disease will, for the first time, be able to live well with, or even be free of this lung disease. 
Research undertaken by the team has already shown that their gene transfer approach is successful in several non-human models. The ongoing challenge, in Australia’s severely-restricted medical research environment, is to continue to develop their work to the point where they can commence human clinical trials.
If the techniques and strategies being developed by the team are successful, this research has the potential to vastly improve the lives of the 3,000 people living with CF in Australia, and more than 70,000 people worldwide.
It was the dedication of the research team and their innovative approach to finding a cure for CF that led the Coopers Brewery Foundation to encourage their shareholders to support this very important project being delivered in South Australia.
 “Since the Foundation inception in 2006, we have distributed more than $3 million to support over 200 charitable projects and we look forward to supporting many more in the future” said Melanie Cooper, Coopers Foundation Board Director.
For Cure4CF Foundation, this donation arrived at a critical time for the research team.
A recent breakthrough in the UK further validated the gene correction research approach of the Adelaide CF Gene Therapy Research Group, and highlighted the need for additional funding to fast track this highly promising local program.
David Coluccio, Chairman of Cure4CF Foundation said “The Adelaide research team now has independent evidence for the first time, based on human clinical trials conducted in the UK, that a gene therapy can correct CF lung disease.”
“The type of treatment the Adelaide group are working on would benefit anyone with CF,” Mr Coluccio said. “Additionally, what is also exciting is that not only will this research contribute to a global cure for cystic fibrosis airway disease, but it also increases the worldwide knowledge on the use of gene therapies and stem cell research, to apply to developing treatments or cures of other genetic diseases.”
“The research team are passionate about finding a cure for CF, and the very generous support of the Coopers Foundation shows that the community feels as strongly as us that now is the time to cure cystic fibrosis; that now is the time to support this world leading research being conducted right here in Adelaide. 
“Because of partners like the Coopers Brewery Foundation, the research team are able to accelerate their research efforts toward human clinical trials, which we would hope can begin in the next five years.
“But ongoing support is vital. To accelerate this research the Adelaide team needs funding,  so we are hoping that the backing of an iconic organisation like Coopers Brewery, and the belief of their Foundation in this research will really encourage the community to consider supporting Cure4CF and its effort to find a cure for cystic fibrosis airway disease. 
“We believe that together this is a disease we can, and will conquer.”

A welcome injection of funds for critical cystic fibrosis research from the NHMRC



Cure4CF Foundation is delighted to announce new funding of more than $814,000 for local research into a potential cure for this chronic lung disease.

The money has been made available from the National Health and Medical Research Council and will help fund a three-year project to identify the role that airway stem cells play in gene therapy.

Associate Professor David Parsons, who heads up the Adelaide CF Gene Therapy Research Group, said the money is essential as his team prepares to move its work into human trials in the next five years.

“It will not only allow us to better understand how to produce a long-term gene therapy treatment, but it will also help advance the potential for using this method as a prevention for CF airway disease,” said Mr. Parsons.

David Coluccio, Chairman of the Cure4CF Foundation, which has committed to underwrite the research group’s five-year strategy, said this financial support is a vital and critical step.

“If the techniques and strategies developed are successful, there is enormous potential to vastly improve the lives of the 3,000 people living with CF in Australia, and more than 70,000 people worldwide,” said Mr Coluccio.

“The NHMRC support certainly adds a lot of credibility to this project but costs remain large and Cure4CF still needs to raise more than $1.5 million annually for the next five years to help ensure this goal can be realised.

“The journey to find a cure for CF must be a collaborative effort and in Adelaide we are fortunate to have some of the best people working on this research. But really it is now up to us as a community to make sure that this potential cure for CF airway disease is made a reality, by also making a significant investment in it.”