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In the media

Cystic Fibrosis Australia advocate on behalf of the CF community and aim to raise awareness for cystic fibrosis, the condition, the drug approval process, trials and the stories of people living wity CF. Here are some of the recent articles featured in the media:

Media Outlet

Date aired/
published

About this article

Daily Mail 27 May 2017 Peter Oxford is still dancing with CF at 47 years old after doctors told his parents he wouldn't live past six months. Read more>
The Sun 24 May 2017 Health Minister vows to improve cystic fibrosis unit at Westmead. Read more>
SMH 1 May 2017 CF miracle drug among Turnbull Government's $310m PBS listing. Read more>
Morning Show 1 May 2017 New Government Scheme makes CF drug affordable. Watch now>
ABC online 17 March 2017 Cystic fibrosis advocates push for affordable access to Orkambi only drug available in Australia. Read more>
Daily Telegraph 10 February 2017 Toddler Jude to look forward to a brighter future after cystic fibrosis drug approved. Read more>

Ninenews.com

8 February 2017

Brother's wait for life-saving drug. Read more>

Today Tonight

Thursday 12 May 2016

With the new CF drug Orkambi being declind funding by the PBAC, CFA CEO Nettie Burke, Clinician Peter Wark and CF advocates Morgan and Rebecca share their thoughts on the outcome and where tof rom here. Watch now>

ABC South West

Friday 6 May 2016

Taryn Barrett's son Connor is not yet old enough to be on CF Drug Orkambi, but when he is old enough she wants to ensure the drug is available to people with CF in Australia. Read more>

Bunbury Mail, WA

Tuesday 3 May 2016

Bunbury parents share frustration on CF drug Orkambi being declined by the PBAC. Read more>

Sydney Morning Herald

Sunday 1 May 2016

Michelle Philpott, mother of Connor, 15 and Macyn, 7 - who live with cystic fibrosis, shares her frustrations around the drug Orkambi being declined by the PBAC. Read more>

Sunshine Coast Daily

Wednesday 27 April, 2016

10 year old Evie is living with CF, her mum Sonia has been advocating to have the CF Drug Orkambi to be approved by the PBAC to drastically improve her daughter's life. Read more>

SBS World News

Friday 22 April 2016

On the day the PBAC announcement is made regarding the approval, deferment or declination of the CF drug Orkambi, SBS world news speaks with CF Advocate Jessica Bean, CFA CEO Nettie Burke and Clinician Sarath Ranganathan. Watch now>

 

 

Media Releases

Cystic Fibrosis Australia are keen to be in touch with local and National media outlets, as well as being the go to organisation for CF related information. Please see below our most recent media releases.

  • 23 May, 2017 - Putting a price on life. Download>
  • 8 February, 2017 - Orkambi. Download>
  • 7 February, 2017 - For 30 little Australians Cystic Fibrosis Australia celebrates. Download>
  • 6 February, 2017 - Official Kalydeco statement from Health Minister expected, Orkambi protest continues. Download>
  • 5 February, 2017 - Kalydeco approved just days before protest, fight for Orkambi continues. Download>
  • 2 February, 2017 - Update Canberra Protest. Download>
  • 18 January, 2017 - Canberra protest. Download>
  • 27 April, 2016 - Our health system is ailing. Download>
  • 22 April, 2016 - Australians forced to hold their breathe. Download>
  • 15 April, 2016 - PBAC ruling on cystic fibrosis drug to occur next Friday. Download>

     

    Spokespeople

    Cystic Fibrosis Australia have a variety of 'experts in the field' of cystic fibrosis available for interview on topics such as latest research, drug results, personal stories, advocacy and much more. Please see below some of our spokespeople howevere we are also able to source addtional experts upon request. 

    CFA CEO Nettie BurkeNettie Burke

    CEO
    Cystic Fibrosis Australia

    Nettie began her career in the corporate sector where she managed the marketing, communications and business strategies for many high profile brands both in Australia and the UK.  This involved consumer, commercial, government and even interpersonal communications and advertising strategies for major players in the retail, energy and property arenas.  

    Most recently Nettie has devoted her skills to working in the Not For Profit and Health Services sectors.  This scope of experience encompasses individualised funding and self-management programs, fundraising, corporate partnerships, digital and social media, donors and community engagement.

    Nettie’s plans for Cystic Fibrosis Australia include building awareness and universal acceptance and support for the cause while generating funds for quality assurance programs, research and professional education. 

    Speaking topics: Advocacy, Research,,Statistics, Drug approvals, Orkambi, Opinion pieces


     

    Sonia with her daughter EvieSonia (mother) and Evie (has CF) Marshall

    Cystic Fibrosis Advocate

    Evie is a bright, bubbly, articulate ten year old who has cystic fibrosis, double del508 mutation. Evie also has cystic fibrosis related diabetes and a bacteria in her lungs that is resistant to antibiotics.

    In one year Evie will: 

    • Spend 2 weeks or more in hospital 
    • Take 15,500 tablets 
    • Spend 1,000 + hours doing physiotherapy and nebulisers
    •  Attend 70+ doctors and specialist appointments 
    • Spend 3,650 hours connected to a feed pump for nutrition 
    • Has 730 insulin injections 
    • Go through numerous blood tests, CT scans, MRI's, X Ray's and ultra sounds 
    • Is absent from school due to illness around 40 to 60 days. 

    When Evie was just 4 years old and starting her first day of kindergarten, she stood on her chair and announced to her class that she had cystic fibrosis and was here to make the world a better place. This story sums up Evie perfectly. Evie's courage, resilience and determination to proactively live life and help others, to spite her life threatening chronic illness, is inspiring. 

    Evie's mother, Sonia, is a single mother of two (Evie with CF and 7 year old Liv without CF). Sonia, inspired by Evie's journey and the difficulties Liv faces being a cystic fibrosis sibling, is actively involved in advocacy for the Australia Cystic Fibrosis community. 

    Sonia is particularly involved in advocating for medications and treatments that improve quality of life and longevity for those with CF. She also advocates for mental health support for those with CF, their families and carers as well as organ donation. 

    Speaking topics: CF, Living with CF, daily schedules, Orkambi


     

    Jessica BeanJessica Bean

    Cystic Fibrosis Advocate

    Jessica Bean is an inspirational health and empowerment coach; blogger, and publicspeaker, who supports young women living with illness to become advocates fortheir own health and happiness.

    Informed at 21 that she would need a double-lung transplant as a result of thegenetic condition Cystic Fibrosis, Jessica decided to take control of her healthexperience. A four-year journey to radically stabilise her health ensued, and todayJessica is still breathing through her own lungs.

    Jessica believes every person’s health journey is unique and through her work shemotivates women to find the heart amidst their healthcare, so they can move beyondbeing a patient to embrace the life they truly want with clarity, confidence andcourage.

    Speaking topics: Advocacy, living with CF, Orkambi, drug trials, costs, statistics.


     

     
     
     
     
     
     
     

     

     

    Media contacts

    For general media enquiries relating to recent drug updates, research results, statistics, information on CF or to organsie an interview with one of our spokespeople please contact:

    Vanessa Kelso
    Digital Communications Manager
    M: +61 424 179 393
    E: vanessak@cfa.org.au