Cure4CF News

Farewell message from Linda Jones, EO, Cure 4 Cystic Fibrosis

When I took on the role of Executive Officer with Cure 4 Cystic Fibrosis some two and a half years ago, I never realised what an impact this Foundation, and the wonderful people who are fighting for a cure for cystic fibrosis would have on me.

Every day I have been inspired by our CF Warriors and their relentless pursuit to be part of a cure for this insidious disease, in spite of facing such great challenges themselves.

I have been in awe of the mums, dads, siblings and grandparents who are willing to move mountains, and literally have to do so most of the time, to ensure their loved ones are able to access the best care and treatments. While at the same time doing whatever it takes to ensure the research we support can be further advanced so that one day it may benefit their family.

And I have appreciated the opportunity to see the progression of this research being undertaken by world leading scientists, based right here in South Australia, made possible because of the most generous and kind people across the country who share a belief that each and every person deserves to live a life not affected by cystic fibrosis.

But, my heart has also broken, as while every day we are moving closer to a cure for CF, we are not moving fast enough, and the lives of some of the most courageous and inspiring people are taken by this disease much too soon.

A cure for cystic fibrosis cannot wait, and thankfully, now knowing the ability of the CF community to rally together and fight for a cure, I believe this disease can and will be defeated.

I want to thank each and every person who has allowed me to share in your journey toward a cure for CF, for yourself, for your family, and for those of you who may not even know someone living with CF, but understand the devastating impact it has on a person’s quality of life and choose to support a cure. Thank you.

Being EO of Cure4CF has never felt like a job, it has always been a privilege and I know that while I may no longer be EO of this amazing Foundation, I will forever be a fighter for a cure for cystic fibrosis, standing alongside each of you and Cure4CF in the trenches making sure this research progresses until we win this war.

Warmest regards
Linda

Installation of the new Bioreactor - update from PhD student Ali McCarron

Research update - PhD student, Ali McCarron.

An important step in bringing our airway gene therapy to clinical trials is generating the large amounts of gene vector needed to dose human sized airways.

With the installation of this bioreactor, we can now develop methods that will enable us make our vector at the quantities needed for clinical trials.

Once these methods have been established, we can pass them over to a commercial partner who will produce the gene vector needed for human use. The generous funds donated towards the purchase of this bioreactor will help hugely in accelerating our progress towards first-in-human airway gene therapy trials in patients with cystic fibrosis.

Cure 4 Cystic Fibrosis Manifesto and Values

The Cure 4 Cystic Fibrosis Manifesto

Cure 4 Cystic Fibrosis exists to find the cure.

As individuals we are relentless and passionate in our fight, and together form a remarkable force.

We are closer to a cure than ever before, but until the day comes when no lives are lost to this disease, we must remain steadfast in our pursuit.

We are sharing stories of hope, and demonstrating our immediate impact on the advancement of this cure to inspire others to join our fight.

What we are fighting for are the funds needed to continue world-leading medical research happening in Australia. Research addressing the root cause of Cystic Fibrosis at a genetic level, with a clear path towards human clinical trials. Research that will lead to an eventual lifelong solution.

Together, and only together, are we able to take the action necessary to pursue a future free of this disease.

Cure 4 Cystic Fibrosis is all for the fight.

Our Vision

A cure for cystic fibrosis.

Our Mission (our battle cry)

We are joining forces with a formidable community to fund a reachable and fully accessible cure for cystic fibrosis.

Together, and only together, are we able to take the action necessary to pursue a future free of this disease.

Our Values (our cure code)

IMPACTFUL
We want to give cystic fibrosis the visibility and resources it needs to accelerate a cure.

COLLABORATIVE
We form a deeper connection with our supporters to build a resilient community of like-minded go-getters, for whom we are forever grateful.

INTEGRITY
We remain uncommonly accountable and transparent when it comes to our goals and operations.

INSPIRATIONAL
We spread the power of optimism with a relentlessly warm spirit.

PASSIONATE
Our hearts, heads, talents and time are all for the fight.

Meet Juliette Delhove - Newest member of the Cystic Fibrosis Airway Research Group

The Cystic Fibrosis Airway Research Group and Cure 4 Cystic Fibrosis welcome Dr Juliette Delhove.

Juliette with PhD student Ali McCarron

Dr Juliette Delhove completed her Bachelor of Science degree in South Africa at the University of Cape Town in 2008. She specialised in biochemistry, genetics and development, and was awarded a Medical Honours degree in human genetics the following year.

Subsequently, she studied at Imperial College London in the UK where she obtained a Masters degree in human molecular genetics. This lead to a collaboration between Queen Mary’s University of London and University College London where she worked as a research assistant developing biosensing lentiviral reporters. These were utilized to non-invasively monitor biological pathways in vivo with the aim of reducing the number of animals required for experimentation.

Concurrently, Juliette was enrolled as a PhD student at the University of the Witwatersrand, in collaboration with St. George’s University of London. Her project evaluated the temporal signalling profiles of key biological pathways during the development of liver disease.

In 2016 she was employed at the Great Ormond Street Institute of Child Health were she was part of a consortium focused on developing a packaging cell line for large scale lentiviral production.

In 2017, she relocated to Australia and is now a part of the Cystic Fibrosis Airway Research Group where she will be utilising her skills to develop and optimise lentiviral vectors for use in gene therapy for cystic fibrosis.

On behalf of Cure 4 Cystic Fibrosis and the Cystic Fibrosis Airway Research Group, we welcome Juliette as a wonderful addition to the fight for a cure for cystic fibrosis.

Special Announcement - Major funding boost for Cystic Fibrosis research

SIGNIFICANT FUNDING BOOST FOR AUSTRALIAN CYSTIC FIBROSIS LUNG GENE THERAPY RESEARCH

We are very excited to share some news that will have a significant impact on the research to develop a cure for cystic fibrosis airway disease, happening right here in South Australia.

Cure4CF and the Cystic Fibrosis Airway Research Group we support, has recently been successful in winning a major grant to undertake a critically important research project that forms part of preclinical testing ahead of commencing human clinical trials.

The grant is being provided by the Fay Fuller Foundation, a wonderful Foundation committed to improving the health and wellbeing of South Australians, and is for the amount of $670,000, provided over the next two years.

The project will enable the Cystic Fibrosis Airway Research Group to establish and use the first Australasian CF rat colony to test the effectiveness of corrective gene therapy on CF lung health. It will also use a revolutionary X-ray imaging technology, which can map airflow during breathing, to accurately measure changes in lung health.

If this project proves successful, it will be a global breakthrough in the treatment and assessment of cystic fibrosis airway disease.

“Adding a corrective CF gene into the affected airway cells of people with CF is recognized as the only way to potentially prevent or effectively treat the disease. What this ultimately could mean is that if a baby born with CF is given airway gene therapy at birth, the disease should never develop; and for people living with CF today, it has the potential to halt lung disease in its tracks,” said David Coluccio, Chairman, Cure4CF Foundation.

“Success in this project, and a gene therapy to treat cystic fibrosis airway disease will be quite simply, life changing.”

The work is underway at the Allan Scott CF Research Laboratory at the Women’s and Children’s Hospital and is led by pioneering scientist, Associate Professor David Parsons and the Cystic Fibrosis Airway Research Group.

“Medical research at this level can at times be painstakingly slow and of course very expensive,” said Assoc. Prof. Parsons.

“But after 20 years of steady success we know that we are on the right track. The funding provided by the Fay Fuller Foundation will allow us to demonstrate that this airway gene therapy, carefully developed in Adelaide, can prevent or halt the progression of CF in the lungs.

“In the global efforts to find a cure for cystic fibrosis, this research is a significant advancement.”

Suffice to say, all of us at Cure4CF are overjoyed with this grant success and are enthused by the opportunity to further develop our partnership with the Fay Fuller Foundation.

David Minns, Chairman, Fay Fuller Foundation said, “For a number of years we have been following the work of the CF Airway Research Group and their pioneering methods and we saw their current funding needs as integral to driving their research forward.

“To have such world class scientists developing a gene therapy intervention here in South Australia is a wonderful story and one that we are keen to support.”

Of course, there is still a lot of other work being progressed throughout the whole research team which requires our support, and must be completed prior to moving this research to human clinical trials.

However, as a Foundation we remain committed to working together with each of you who are essential to our fight against CF. Together we will continue to do all that we can to bring us closer to our ultimate goal - a cure for cystic fibrosis.

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.